It looks like we are heading back to the hospital for more IVIG. Things have continued to deteriorate further and we still have seen no benefit from the PEX. I met with the ped today and she and I both agreed that we should try to do something to ease A’s agony. I spoke with A’s preschool today and the teacher said that A has been a different person since returning from PEX. She has been more withdrawn, less engaged with the other children and had a few difficult times. The teacher said that A has gotten progressively worse since our return. This is identical to what we are seeing at home.
Currently our ped is speaking with the insurance company about trying to get a year’s coverage of monthly IVIG for A. I hope we get to go in tomorrow first thing for this. John and I are heartbroken to hear that the one place A was thriving has even become difficult for her. I am just hopeful that IVIG will help her. I have concerns since the PEX didn’t work as to whether the IVIG will work this time or not.