peglem Posted January 8, 2011 Report Posted January 8, 2011 Allie had her 12th (I think) IVIG today, and though, I've noticed this smell every single time, for some reason I'm very curious about it this time. Have you guys noticed a strange urine/feces odor with IVIG? Not sure how to describe it- kinda like asparagus urine, but not as strong.
Priscilla Posted January 8, 2011 Report Posted January 8, 2011 I didn't notice any smell w/ dd ivig, but the sucrose based ivig brands can cause renal failure. If you are not already having her monitored for that, you may want to have her BUN and Creatinine checked since she has had several doses. Is the urine very concentrated? can you measure how much she is going? Even if it is frequent, the volume is very important.
peglem Posted January 8, 2011 Author Report Posted January 8, 2011 I didn't notice any smell w/ dd ivig, but the sucrose based ivig brands can cause renal failure. If you are not already having her monitored for that, you may want to have her BUN and Creatinine checked since she has had several doses. Is the urine very concentrated? can you measure how much she is going? Even if it is frequent, the volume is very important. She gets all that checked @ every 6 weeks. Its only during the procedure and the rest of the day that it smells like that. The urine volume is not being measured, but it seems like more than usual- again, only during the infusion.
philamom Posted January 8, 2011 Report Posted January 8, 2011 I haven't noticed any smell during my daughter's four infusions. May it have something to do with getting it done in one day? Or did you notice it the first time, when it was done in two days (correct)? Just thinking out loud.
sf_mom Posted January 8, 2011 Report Posted January 8, 2011 We have not done IVIG but I know that smell because it is present with my daughter. VERY STRONG and hard to miss. It is included in our symptom list with Dr. but they did provide explanation. -Wendy
peglem Posted January 8, 2011 Author Report Posted January 8, 2011 I haven't noticed any smell during my daughter's four infusions. May it have something to do with getting it done in one day? Or did you notice it the first time, when it was done in two days (correct)? Just thinking out loud. It was even worse with the 1st one- she got diarhea with that one. For those who have not smelled it, do you go into the bathroom with your children?
philamom Posted January 8, 2011 Report Posted January 8, 2011 I haven't noticed any smell during my daughter's four infusions. May it have something to do with getting it done in one day? Or did you notice it the first time, when it was done in two days (correct)? Just thinking out loud. It was even worse with the 1st one- she got diarhea with that one. For those who have not smelled it, do you go into the bathroom with your children? I hate to admit it, but when she's home, I go in right after she's done. She could never flush the toilet because of the sound. Now that she's doing better, I could get her to flush the toilet, but I'm always on c-diff alert. So I secretly like to keep an eye (or nose--yuck) on things, and then flush the toilet.
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