What a crazy week! Keira took a bump to the back of her head (totally non-OMS related) last weekend and coincidentally we started noticing that she was walking a little funny and falling more frequently. We were not sure if we were only noticing it because of the fall or if it was because of her most recent steroid wean. We are now giving her 1.67ml twice daily, every other day, and have been for about 2 weeks.
After a few days of observation and making ourselves crazy I called Dr. Effinger to discuss my concerns. As always, she was very responsive, and although we both suspected that it was due to steroids and not the fall she ordered a CT scan to rule out any head trama. K did awesome for her first CT scan. Although she told her dad she was, "scared" she laid still as a statue and they were able to get a "good picture" the first try. That's our girl! Dr. Effinger called right away to say her, "brain looks perfect" and that we should continue to monitor her until our Clinic Visit on Friday.
Oddly enough, the next two days Keira's coordination seemed better and we have seen no other obvious signs of OMS. I guess this is the hardest part of treating a condition that has so many variables, it's just so hard to be sure that you are doing the right thing at the right time.
Dr. Effinger and Dr. Twist both thought Keira looked good and after watching her run up and down the hallways at the hospital without any issues, we all felt comfortable with the decision to just hold steady at her current steroid dose for the next month and check in if we notice any other issues. As much as we would like for Keira to be off steroids completely, we do not want to rush the process.