I'm trying to decide how you would spell RELAPSE as a 4 letter word, because it certainly is one...maybe RLPS. Anyway, we're in the midst of yet another one. Last week I noticed as Bailey would get tired, her eyes would sort of roll around as her eyelids fluttered & closed. It wasn't the exact same thing we saw in the beginning, but it worried me so I videoed it & emailed the specialist & showed our local docs. They both thought it was "sleepy eye movements", etc. & I think in the beginning it was. Late yesterday it changed & started to happen during everyday activities & not just as she was dozing off & it also started to look like the opsoclonus we saw at onset. She slept all night last night (that makes a total of 4 nights in her entire life that she's done that) so I knew if she was still having the opsoclonus this morning then it definitely wasn't because she was tired. Sure enough, she woke up & I flashed back about 4 months. I took a video of her & emailed it to IL & they called within the hour.
They think she's relapsing because we dropped the dose on her injections down last week as part of the tapering schedule so we'll be doing them daily again for at least 2 weeks. She's being admitted to the hospital tomorrow morning so we can get a bonus infusion of IVIG (she had her monthly dose last Friday) & then Friday she'll start another round of chemo. It's a different kind than we did last time, but it's sort of the same story as before, it's not as big of a dose as they would use if they were using it to treat cancer, so she probably won't lose her hair, etc., but we'll do it once a month for the next three months. Hoping & praying all goes well & we should be home late Friday night.
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