Our son was diagnosed with ADEM in October 2013. It took months, but he has recovered. There are residual issues including focus, trouble retrieving memories at times, and fatigue, but overall he is I would say back to 95% functionality.
This weekend we spent time with his cousins, and noticed that he got very very tired. So tired that without anyone noticing he went into another room and lay down on the floor. When I spoke with him he was extremely sad, didn't know why, and felt really tired. I was wondering if it was the noise and heat in the room that got to him? This continued on and off for the past two days, involved a headache, and he did fall over once.
I don't want to overreact - which I tend to do as a mom who has seen what happens when a child has ADEM. I also don't want to avoid the signs. Does anyone else experience things like this? He has done this before when it's really loud, just not for so long.
Christina - mom of 7 year old boy
I can appreciate your worry, but I myself have had similar issues. My best guess is that any kind of over-stimulation (travel, visiting with people/crowds, noise, visual stimulation, temperature changes, etc) causes fatigue. When I know I'm going to visit my book club, for example, I don't do anything else all day and still know I will be exhausted when I get home. A movie can do that too or being in the car at night - all the headlights and tail lights seem to cause fatigue for me.
And then when I'm overly tired, I become emotional. Probably just like anyone else, it's just that littler things cause fatigue so it seems to happen more often. And of course, having to leave a party is cause for being sad.
Headaches for me are part of my brain's warning system that I have tried to do to much. Before the headaches (again for me), my eyes get blurry, then my hearing gets static, then my speech slurs, then I stumble, THEN I get a headache. I try to think of it as my brain saying, "Hey! I've hit my limit. Go rest!"
My husband has learned the warning signs, and I pay closer attention to my body now. Blurry eyes? Time to go.
And then of course, after over-stimulation, the resting period is usually much longer. It can take me a day or two to recover. We now just try to plan for that.
Hope this helps. I'd be interested to see what other folks are experiencing too.
I completely understand your worry. It is a delicate balance between being alert to your son's needs and overreacting. Looking back at my son's ADEM, which happened when he was 6 years old, followed by recurrent episodes of related health problems until he was 13 years old, the number-one piece of advice I can give you is to stay positive and focus on what will almost certainly be a good outcome. Watch and observe while being objective and positive. I have the benefit of hindsight, as my son has been healthy now for 3 years (he's 16), but believe me, if you maintain a positive, optimistic perspective, you will look back someday and be so glad you did! It's the best thing you can do for your son.
Christina, I tend to agree with Laura. Stress and over-doing tends to make me emotional and short-tempered. Frustration is another one of those wearing-out things. I would suggest trying to make him comfortable and try to keep him calm when he looks like he is wearing-out. Glad to hear he is at 95%.
My son only 8 months now since ADEM also has issues with either blurred vision or double vision when he gets exhausted. He gets fatigued because he does not want to stop playing and running. I tell him to stop and rest when he is tired because his body will start screaming for a break. I noticed if he continues playing the headaches begins. When he gets this tired usually late at night he looks sad but when I ask him what is wrong he says he is ok and nothing happens. He is only 10 years old and very active. I am afraid he worries too much about getting sick again.
Good morning Christina. In my case things started to get ugly 9 months after the attack. Twice I fell asleep at work under my desk in my office and once I fell off my motorcycle! At the end they diagnosed epileptic seizures and was prescribed Keppra which I took for more than a year. The damage on the nervous system is something that can not be “repaired”, overcome yes. Again this depends on the extend of the initial damage. In my case far too much to go, even two and a half years later. Memory gaps will always be there not so much for the past but for the present. I can remember things from my childhood 40+ years ago but can not remember things I did last week…Psychology plays a vital role. Sometimes my wife pushes me to the limits the whole system goes bananas and I switch off. This is a way of defence to avoid domestic violence! On the other hand being over sensitive towards our 3 year old son makes my wife go bananas because she claims that I got him rotten spoiled with my immense tolerance. Yes I am far too emotional. Headaches come and go so does fatigue. I need some rest, usually a mid day nap. Hot summer is an uncomfortable period of time.