Posted 9/29/2007 11:54 AM (GMT -7)
As most of you know, bratcat started flaring again about 2 weeks ago, almost exactly one year since she first flared. This time around though she was already diagnosed and on medication. She has been out of school for the past week and a half. I have seen a little improvement each day since she added the hydrocortisone enemas. Her doctor is trying to hold off putting her back on steroids (even at a low dose). We spoke with him on Thursday and he said, unless we felt a need to speak with him over the weekend, we should touch base with him on Monday. If bratcat continues to slowly improve, hopefully she will go back to school (at least for a few classes) this week.
However, today was Homecoming. Bratcat is in the symphonic band and they are amazing to listen to. Last year she was very sick (she had her colonoscopy 3 days after Homecoming last year). She sat on the sidelines and I can vividly remember how sick she looked. This year she was determined to march. We had to make one stop on the way to the parade for a bathroom break but we got to the lineup. She hasn't seen anyone for almost 2 weeks. It was wonderful to see the response from the kids and the teachers. Rather than watch with my husband from our usual spot, she asked me to walk along the parade route staying near her band (just in case). She plays trombone and was in the middle of the entire band. It was great watching her play and march (and having had to keep up I can tell you they really move at a quick pace). (If you get a chance, listen to the songs Vehicle and Horse on the computer to hear what they played.) It was a one and a half mile parade. By the end she was wiped out (and we forgot to bring a water bottle). She got back to the truck, got a drink, got her body temperature leveled out and felt a bit better. Right now she is totally exhausted and is taking a nap. But she made it through the parade!
And by the way, her younger brother marched with his middle school band for the first time this year. He plays trombone also. And he was fabulous (they played Yankee Doodle Dandy)! Hey you never know if he is going to check out this website--I had to give a shout out to him too.
--Mom of bratcat (16 years old)--
bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday
Rowasa - 7/07 tapering slowly
hydrocortisone enema - alternating with Rowasa
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! No more hydrocortisone enemas! Summer 2007 - slowly began tapering Rowasa
Keeping our fingers and toes crossed!!
9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortison enemas.