My son started regressing about one year ago (maybe a little before if I think about some small things I was seeing but didn’t realize were DSRD related). He was officially diagnosed on February 7th of this year. Dr. Anadani (his neuroimmunologist at OU Medical in Oklahoma City) sent me this on that day: “I really think we need to start IVIG ASAP now since we have some preliminary results from spinal tap.”
Since then, I have basically just gone with “what he wants”, as far as going outside or staying inside, walking to one of his sibling’s houses or attending the various birthday parties for his nephews and nieces. His family is involved in outdoor and indoor soccer matches and we haven’t attended those either. I don’t make him go on walks around the property with me, I don’t make him do his laundry or put it away as he used to like to do.
My daughter has encouraged me to just be here for him, make his food, remind him to drink, let him play the dance playlist I have set up for him on YouTube (one activity he likes to do) and let him organize his clothes (another activity he is still doing). She reminds me that we really don’t know what he is feeling, what he is going through, what pain he is feeling, what behaviors he has control over or not – His brain is hopefully healing with IVIG, but it is a process. I am thankful I am in a situation where I can just be at home with him.
If I have to be home to help him heal, I am good with that. And, might I add, if healing doesn’t come like I would like it to, I am committed to my son and what is best for him, even if this has to become a normal way of life for us.