Acute Disseminated Encephalomyelitis (ADEM) Support Group

Struggling to sort out ADEM's effects on my stepson

My stepson, W (19), was diagnosed with ADEM in mid November. We were lucky that the case seemed pretty mild. His primary care physician saw several lesions on his initial MRI, but UK hospital in Lexington, KY ordered a new MRI and after that the doctors only talked about one lesion.
He began receiving therapy and using medications for anxiety and depression in October. I’m really having just a terrible time trying to figure out what symptoms are due to his anxiety/depression and what symptoms are from the ADEM.

He has been the sort of person who lies and makes up stories and tells them as if they are true since he was a small child. That is normal behavior for him. According to him, he’s been trying not to tell lies. However, his therapist told him (according to him), that because of his anxiety a lot of his memories have been lost and his brain makes up memories to replace them. I looked it up and it’s called Confabulation.
The issue is that this behavior seems so much worse since he had ADEM. On the day that he left the hospital, he told me a story where he and a bunch of other children were standing with his mother on her front porch watching a McDonald’s being destroyed by a tornado a block away. No. Obviously that never happened. His mother is terrified of tornadoes and there isn’t a McDonald’s a block away from her house. (He hasn’t seen his mother in seven years).
I feel like his lying is worse. Like, he’s lost something that would oversee his thoughts and lies (I know they aren’t exactly lies, he says “misremembering”. It’s just easier to type “lies”). Like, something in him should say, “Wait a minute, this doesn’t make sense at all. This is impossible. It can’t be true.” It’s like the ADEM worsened an already existing problem.
He’s always been prone to exaggerating things about himself. Before the ADEM, he was saying that he can do algebra problems in his head just as fast as the calculator. His brain just “gives” him the answer. My husband and I disproved this with a very quick test. However, now he is saying things like he’s fluent in Spanish. Not at all true. He heals incredibly fast. Uh, what? He’s been talking to the cows on my in-laws neighbors farm for years and the older cows are telling him that they’re sad… I’m completely lost. Completely.
It’s also a huge problem that his memory is corrupted. Since leaving the hospital he’s been complaining about the sunlight and bright lights giving him headaches. I think it’s because of the ADEM, I’ve never known him to complain about light-induced headaches before. According to him, he’s always had them. His hands are shaking badly. Before the ADEM, he had a slight tremor, but he insists that his hands have always shaken like that.
In general he just seems a lot more “insane” than we ever thought him to be. I can’t tell if this is because his therapist encouraged him to share with us more and so he’s telling us more, or if the ADEM is making him “crazier”.
Maybe it doesn’t matter. It is what it is whether it’s caused by the ADEM or not. Right? If it’s the ADEM, then he just has to wait to maybe heal. It isn’t like the doctors will say, “He’s acting crazier? Here, just take this medication and it’ll be fixed.”

Ugh. I’m just venting now, but this on top of the fact that we can’t get him to work or keep a job is killing me. I’m so worried that he won’t be able to work. Are his hands shaking so badly that he won’t be able to flip burgers at McDonalds or work on an assembly line at a factory? A doctor said that he might always be unstable on his feet. Like, if he got bumped he’d fall and hurt himself. How can you work fast food or at a factory surrounded by people and never get bumped into? University was already not an option because he is so lazy and unmotivated…and now it seems even more impossible.

Oh, one more thing. I’m worried that when he goes back to the neurologist in January that he won’t let me go in to see the doctor with him. He’s an adult and can make that choice. But he can’t see that his shaking is worse and his eyes are more sensitive. I really feel like I need to be there. If he says I can’t go in to see the doctor with him, will the doctors read an email (if I can get an address) or a real letter if I send it to them?
Thanks for reading through all of my rambling :).
Cass

It sounds like you have a lot on your plate there Cass. As you already know, there’s so much overlap between mental illness and brain issues. I didn’t hear you mention much about his father. Is he actively involved in managing his son? I would encourage more active involvement. I know that in the states, your stepson might be eligible for a social worker to help manage some of the issues, in addition to a therapist. It’s good that you’re reaching out, but remember that he is an adult, and is not solely your responsibility.

Sharon from ModSupport

Cass,
How are things going with your step-son?
Lynn