An Unremarkable Day
My 9 year old had a really bad morning the day before yesterday. I freaked out, contacted the doctor, (we've had a bad week with intrusive thoughts and the odd behaviors). I knew we needed a change, and I do think we really DO need a change. What though? I think IVIG should have been done already. The doctor ordered some blood work to test for titers to see last infections, none of them Covid19. Things like lyme, strep, herpes, etc. He ordered a mold urine test and this is because I was thinking this and expressed it. I think I pushed the doctor this direction, and I don't think I should have. I panicked. My kid was showing scary symptoms, and I panicked. Sigh. I intended to really discuss IVIG more, what we will need before we know that's the direction to go. I ended up with orders for all these tests and an order for an EEG as well.
I think it's not any other infection. I think it's not mold, or allergies, or red dye. I think it's a post covid issue and we need IVIG. I want to get IVIG and I hope it's not too late for it to make a difference.
Yesterday though, my son was better than the five days before. He did not expressed the negative intrusive thought of wanting to die. He did not have a light sensitive event. Nor did he put a blanket over his head and go underneath a table or chairs or slide to the floor moaning and writhing in confusion. He was able to go to the library and do school
What wasn't normal was how he did his day. He was demanding, short with us, and seemed agitated. He was somewhat bossy. He did school, but briefly. He did not write anything out, but only did what he could accomplish on the computer. He did listen to out loud bible reading, and was able to read a story and do some online math quizzes. He zipped past a lot to get to game time. He wanted to play games on the switch when he got home from playing games on the computer after school was done. I did not let him do that. We ate dinner, and he was low in affect. More Eeyore like but sullen and not talking about it. He seemed tired. He ate well, and took his bedtime medicine on time. He did talk and was appropriate. He helped with clearing the table and with setting it before supper. These are all good, and he went to bed early enough.
And I feel bad for getting him more tests and less action as to help.
One note, the doctor stopped one antibiotic and is trying azithromycin. Not sure what the aim is for that. But he didn't have a fit today. Maybe it's the new med or stopping the antifungal. Or maybe he just was able to keep it together today against the will of his mind. Not sure.