Thursday, April 30, 2009

Disappointing News

Last week Lily had her first relapse with her Nephrotic Syndrome. I kind of saw the writing on the wall a few days before it became official. We still monitor her urine for protein fairly regularly. She usually reads negative or sometimes trace if I check it later in the day. About a week and a half ago she started fluctuating between trace and +1 (the scale runs from negative to +4). As soon as I saw the +1, I knew it was coming back, even though I was hoping it was a fluke. Then last Wednesday she came down with a 103 degree fever and I knew it was back. The next morning she was +4...full blown relapse. While this was disappointing, it was not surprising. 70% of kids will have relapses, so we expected it even though we prayed for the best. I called her Pediatric Nephrologist and told her what was going on. She told us to wait one more day and if she was still +4 to go ahead and start her back on the prednisone. Ugh. I do not like that stuff. The next morning she was still +4 so we started the medicine, remembering full well the complete meltdown she had the first time back in October...45 minutes of inconsolable meltdown. This time Lily has handled the medicine very well. The only side effects I'm noticing so far are a few moments during the day where she will just kind of stare off into space with a blank look on her face. She snaps out of it very quickly, but it can be little unnerving. She's also a bit moody as well...more so than usual.:o) She is only taking half the dosage she did the first time she was diagnosed (only once in the morning instead of twice a day), so that is probably keeping the side effects to a minimum. The good news is that the medicine started working very quickly. She started the prednisone Friday and by Tuesday she was down to a +2 and yesterday was +1. As soon as she reads negative for 3 days in a row, we can start weaning her off. The first time we still had to keep her on the full dose for a month after she was negative. She currently takes 10 ml's every morning (2 teaspoons). We will lower her dose by 2 ml's every 2 weeks as long as she stays negative. So while the weaning off process is long and slow, at least she won't be on it for as long as she was before. I can't tell you enough how blessed we are that the medicine works so well for her. I've read so many stories of children not responding to the prednisone and having to try so many other drugs, and then having to change the dosages on a daily basis to try to "fool' the kidneys. Sometimes the kidneys become "addicted" to the meds and the kids will go back to +4 the minute the dosage is lowered. Lily is a very "average statistic" when it comes to this and for that I am very grateful.

2 comments:

Kevin and Violet said...

Poor Lily. We will keep her in our thoughts and prayers.

Kevin and Violet

Lindsay said...

Sorry to hear this happened, but glad Lily is responding so well to her meds and is on the mend.