Friday, December 30, 2016: Something to pray for
Edward has been relapsing for a few months. It came on slowly, so we weren't sure it was really a relapse at first. During the early part of the summer (when he was 3.5 years old), Edward was speaking really well, confident and pleasant to be around, and was nearly potty trained. He was using the potty regularly, keeping his diaper dry at night, and going days without accidents. In August he began to have more and more accidents until eventually we stopped trying to train and went back to full time diapering. We kept thinking he would improve after his monthly IVIg, but instead he began declining in other ways--sleep disturbances, screaming, increased crying and clinginess, worsening of his garbled speech, and odd moments that mimic autism where he gets really focused on one thing and can't be pulled away or deterred from it without a full on screaming/thrashing episode. When I line them all up like that the symptoms seem so obviously the earmarks of an OMS relapse, but unfortunately that's not how real life works. Those things are interspersed with hours and days of our sweet, normal Edward. Things that might be symptoms pop up at times when they might also easily be attributed to a late night, a change of schedule, a long car trip, a mild cold, or a few days of less than optimal nutrition. Add to that the fact that this apparent relapse has not been accompanied by any change in balance, mobility, or eye movement, and you can see why we were unsure. It was the sleep disturbances that finally convinced us this was real. He got another four-week course of rituximab (usually his miracle drug) in November, but we haven't seen any improvement, and his sleep disturbances and other OMS behaviors have only gotten worse.[...]
