• Stop the antibiotic?

    Nadia has another yeast infection. And of course she doesn’t like cream on her bottom as it just reinforces her ‘wet’ feeling. I’m considering stopping her antibiotic. I hate to, as I trust the PANS MD who is following Nadia, but a huge part of me feels like it’s doing more harm than good, at least right now. I’m going to skip it today, and I guess email her doctor…

  • No Better

    I know it’s only been one day off the Singular, but Nadia doesn’t seem any better… She is still saying she feels wet, pupils are large, not really wanting to eat a lot, has really weird stringy thin poop… There is a clinic in Minneapolis, MN that specializes in complicated medication issues, Newbridge Wellness. Months ago I must have submitted some information about Nadia and asked to be contacted. Well,…

  • OT Feels Pointless

    Occupational therapy feels so pointless. This morning the OT rolled Nadia in a large tube back and forth across the room for awhile. Apparently it’s supposed to help with her sensory issues. And then they played a memory game. I feel like these are things we do at home… But of course I don’t really want to quit therapy as I don’t want to feel like I’m not doing everything…

  • Whack a Mole

    Treating Nadia’s PANS feels a lot like whack a mole… Nadia was worse today… Large pupils, very moody, went to the bathroom often and sat on the toilet saying it felt wet… Oh, and she was awake until 4am this morning, when she has been sleeping so so so well. So I asked in the online PANS support group, and sure enough, everyone told me their horrible experiences with the…

  • Vaccinated!

    Well, I’m sort of vaccinated. I received the first of my two Pfizer COVID shots last week. A sore arm for a few days, and maybe a little tired the second day, but really no big deal. It’s another Monday, and Nadia is still home with me. We are still struggling with her not wanting to wear pants or underwear. I had her try a pair of underwear on this…