This visit marked the longest time between Keira's IVIg treatments - 8 weeks!
Since Keira's initial diagnosis, she has gone in for treatment every 4 weeks. As you might remember we did 6 months of Cytoxin with IVIg, and now we are just continuing with the IVIg infusions. We were a little apprehensive stretching the medication, especially since we were also trying an every other day routine with her prednisone. However, as important as it is for her to have this medication, it is equally important to get her off it as quickly and safely as possible. OMS is such a balancing act.
All things considered, Keira did amazingly well, but we did notice several concerning things in the last few weeks - She had some unusual tantrums, mentioned that her eyes hurt or that she saw eye "buggies" and we noticed some brief shaky arm movements. Of course we are closely monitoring her and keeping track of when these incidents pop up so we can look for any patterns. It will be interesting to see if some of this goes away once she has the IVIg or if it is from the reduction of steroids.
On the positive side of things, in just the 4 weeks that Keira has been on an every other day dose of prednisone she has lost 2 pounds and grown a little bit taller! She is talking and singing all the time now and totally loving life. She is such an inspiration to us. Thanks again for the love and prayers. We feel so blessed to have such a wonderful support system.