Caeleb has had a zero inhibitor titer for 15 months, but his half-life is just over 4 hours.  It needs to be at least 6 hours to consider  him “tolerized.”  He’s doing great and we have to stay the course with big doses of Factor VIII.  As for his Xolair, the drug that changed our lives by allowing his body to tolerate Factor VIII, it’s time to decrease his dose.  I’m actually not too nervous about the change, but a seemingly small change can turn into something big.

It’s possible that the Xolair has done everything it needs to do for Caeleb’s immune system and the only way to find out is to decrease the dose.  It would be fantastic if he did not have to have these injections any longer.  The drug mixes with 1.4 mls. of sterile water which is hardly anything, but the clear, reconstituted liquid is deceiving because it is so thick.  He gets an injection into each thigh and it used to be a horrible experience because it is so painful.  Now he takes a deep breath and plays his Nintendo DS.  He’s such a warrior.

Time will tell.  Our first dose of 150 mgs instead of 300 mgs will be in two weeks.  I am praying that the right decisions are being made and that all goes well.

More to come 🙂