My son (5y) just got diagnosed with AIWS and I’m so anxious

I saw a post on here from a few months ago about another parent whose kid was diagnosed with AIWS and it made me feel not so alone.

But of course I am still terrified of so many things. I spend way too much time on google so I know it can be anything from brain lesions, to seizures, to migraines, to no known cause. I also am so worried it’s going to become debilitating for him. He already has developed bad anxiety from it.

We have rule out mono as a potential cause and from what I understand (correct me if I’m wrong) symptoms shouldn’t persist past 6 weeks if it is infection induced (I know mono isn’t the only known infectious cause but according to our pediatrician, it’s the most common). We have seen a pediatric ophthalmologist (she was the one who diagnosed him) and we have a neurology appointment in two months.

Google tells me that as long as he is having no other neurological symptoms (he isn’t) then the likelihood of it being a brain lesion or seizure is low but I don’t know if that’s true.

The other factor to this story is that I had some strange symptoms when I was a kid; I never had visual distortions but I would sometimes feel like my body was heavy or my head was a balloon, and then I would get the feeling similar to an out of body experience; I would feel as if my body and mind were not my own, if that makes any sense. I also vaguely recall moments where time seemed to speed up. If I did truly have AIWS, it makes me feel better knowing that it may be a genetic component and that since I outgrew it, my son will too.

Does anyone know other resources for those diagnosed with AIWS? Are there any specialists for this condition?

Also any positive stories of people who have outgrown this?