August 7, 2026
Day 3 of IVIG. Not sure what round this is, but Tate spends around 54 long days a year just getting IVIG infusions. Every 21 days we start a new round of 3 days. I was recently asked what they do?
Immunoglobulin is a donor product. It takes on average 10,000 donors for one bag. This is why it’s so costly. It’s antibodies to help boost Tate’s immune system and most importantly for her, to flush out the bad antibodies her body makes against itself to attack her brain.
We had added a new biologic daily IV med back in April. We saw great positive effects on the dramatically worsening neuro episodes that were causing reduced consciousness. Unfortunately, we’re seeing more of that again. This is one of the most concerning aspects of Tates disease process to witness.
A care conference was had with Tates providers this past week. I haven’t heard much from it, but Tate is scheduled for an upper endoscopy to look into swallowing issues and increased nausea.She’ll also undergo some specialized metabolic testing to try to understand what her body is doing with the limited food she does eat as well as the IV fluids she gets daily to keep her blood pressure up. It’s been a perplexing, difficult space for the providers but especially for Tate to sit in.
We continue to be grateful for all the little things and work hard to infuse mini distractions into our days. We saw Odyssey as a family this last week on cheap day at the theatre(didn’t know this was still a thing!) It has been a couple years since I’ve gone to a movie and especially for as a family.
Super fun!