Another update...
So, I suppose it's time for another update on our Kaylee...
We have now finished with week 6 of this illness...thus the "average length of illness lasting 4-6 weeks" have now past and we still have spots...
Yes, spots, spots, SPOTS!! (Vasculitis) Every day we have new ones...you can tell they're new because they are bright red! Then you have the very dark purple ones, the not so dark purple, the fuzzy edge purple ones, the cloudy purple ones and then the light light purple ones. Will the spots every go away? The newest thing with the spots are that the last batch of them were very painful for Kaylee. When they first show up, bright red ones, they are also a bit puffy...and for some reason-over the past week, when they're puffy they are also extremely sensitive. Kaylee has been such a trooper, hardly complaining...
We've only had 2-3 days where she hasn't been able to walk because of achy joints or muscles...and it's been about 1 1/2 weeks with no tummy cramps!!
Good news: we are slowly tapering off of the prednisone...we've gone from 63 mg/day (which is HIGH for a 55 lb child) to 42 mg/day (med dose) to 20 mg/day to 10 mg/just yesterday and we haven't seen any adverse reactions! (The spots were still there at the high dose...) We are hoping that what we are seeing on the skin isn't reflective to what's on her stomach, intestines and kidneys...which blood work show everything to be ok so far. So, we are VERY glad to be getting off of it. The side effects are not pretty...
Which, I'm not sure if I've mentioned the side effects...but we've seen in Kaylee...the increase in appetite, moodiness, weight gain and moon face...
Anyhow...I suppose that's where we are at for now...I'll keep you all posted...thanks for checking in :)
We have now finished with week 6 of this illness...thus the "average length of illness lasting 4-6 weeks" have now past and we still have spots...
Yes, spots, spots, SPOTS!! (Vasculitis) Every day we have new ones...you can tell they're new because they are bright red! Then you have the very dark purple ones, the not so dark purple, the fuzzy edge purple ones, the cloudy purple ones and then the light light purple ones. Will the spots every go away? The newest thing with the spots are that the last batch of them were very painful for Kaylee. When they first show up, bright red ones, they are also a bit puffy...and for some reason-over the past week, when they're puffy they are also extremely sensitive. Kaylee has been such a trooper, hardly complaining...
We've only had 2-3 days where she hasn't been able to walk because of achy joints or muscles...and it's been about 1 1/2 weeks with no tummy cramps!!
Good news: we are slowly tapering off of the prednisone...we've gone from 63 mg/day (which is HIGH for a 55 lb child) to 42 mg/day (med dose) to 20 mg/day to 10 mg/just yesterday and we haven't seen any adverse reactions! (The spots were still there at the high dose...) We are hoping that what we are seeing on the skin isn't reflective to what's on her stomach, intestines and kidneys...which blood work show everything to be ok so far. So, we are VERY glad to be getting off of it. The side effects are not pretty...
Which, I'm not sure if I've mentioned the side effects...but we've seen in Kaylee...the increase in appetite, moodiness, weight gain and moon face...
Anyhow...I suppose that's where we are at for now...I'll keep you all posted...thanks for checking in :)
Comments
i have missed a couple of posts! cute b-day pictures and you HAVE to help me with audrey's cake this year! she loved the snow white one you made!!!!!!!!!