I thought I'd update you on my daughter Rachel, she has Rett syndrome, is non verbal and was dx'd with Crohn's on Feb. 10th. She just finished her 6 weeks of prednisone, starting at 40 mg and tapering each week down to 5 mg's. I think I screwed up, I should have called her GI doc back around 15 mg's when she wasn't feeling the best, I was thinking she was having side effects from the med and wanted to see how she is off of it. Well, she's had a really rough week, lots of pain so today I called and told him that she had 2 fantastic weeks, the weeks of 30 mg's and 20 mg's. He's putting her back on 20 mg's for a week then we're to call him with the results and if she's doing ok, we'll taper by 5 mg's each week.
How many times can we do this, keep bumping the dose up then taper? I feel so bad for not doing something earlier, I just kept thinking she'd start feeling better as we got rid of the prednisone. UGH.
Joan, if you're out there, how are you doing on your taper, your dose was
very similar to Rachel's if I remember right.
Thanks for your input.....this is the most helpless feeling we've ever had with her, we have no idea what she is feeling, we can only guess. She has minimal eye gaze communication but it's not accurate. I ask her to "look at me if your tummy hurts" she'll look at me but then if I ask her to "look at me if your foot hurts" she'll look too.
Tammy
How many times can we do this, keep bumping the dose up then taper? I feel so bad for not doing something earlier, I just kept thinking she'd start feeling better as we got rid of the prednisone. UGH.
Joan, if you're out there, how are you doing on your taper, your dose was
very similar to Rachel's if I remember right.
Thanks for your input.....this is the most helpless feeling we've ever had with her, we have no idea what she is feeling, we can only guess. She has minimal eye gaze communication but it's not accurate. I ask her to "look at me if your tummy hurts" she'll look at me but then if I ask her to "look at me if your foot hurts" she'll look too.
Tammy