VCUG Advice

[mrsdaksel]

DD (4) was diagnosed with VUR and had corrective surgery at 16 months old. My other DD (18mos) just had her first UTI. Our pediatrician would like her to have an ultrasound and VCUG. I am hesitant to do the VCUG because it absolutely broke my heart when my other DD had it done. My question is whether or not you would have the VCUG done with only one UTI or wait it out to see if she has another one. DD (4) had frequent UTIs so we knew she needed to be tested. I guess I am mostly torn because I know we have the VUR history and I would feel bad if my other DD had VUR also and I didn't test. But I would feel really bad if I made her take the test and everything turned out fine. Any advice is welcome. Thanks!!

[Katc8910]

We decided against the test. DD had one UTI at about 14 months. Our ped said that we could and see if she has another. We then saw a ped urologist, who was a jerk (didnt even look at DD once during the appt and basically told us that we should do the test that dau inhis office. We said no thank you. Finally found an awesome ped nephrologist, very well-respected and practicing at a very good and well-know hospital. She was wonderful. Really explained everything to us, had great bedside manner with DD, took her time and let us ask a million questions. What she told us that the medical community is really split on this. There seems to be e movement away from doing the test after just one UTI and she did not recommend it. Basically said wait and see and we can reevaluate if another UTI occurs. We also asked about the typical treatment, which is prophylactic antiobiotics and she said that it used to be the standard, but now there seems to be a lot of info against it - from the perspective of the health effects to actual effectiveness. I really didnt want to do the test so this really helped me make the decision against it. But this is my decision based on my DD's health and history (no known VUR), lots pf research and discussions with 3 doctors. So now we watch for signs of another UTI, we bought those Bayer urine test strips and test DDs urine if she seems off. We alos give her prophylactic d-mannose, which is supposed to treat and prevent UTIs. She gets half tsp every day i her drink. We use the Now brand - has great reviews on iherb.com, but I buy it on Amazon b/c it is cheaper. So that's my (long) story. Oh, and DD is almost 2 and has not had another infection.

[kwilki8]

What grade of reflux did your older dd have? VUR has a pretty high recurrence rate among siblings, and that rate is even greater for the higher grades of reflux. With a diagnosed UTI and  a sibling with VUR, I would definitely do the VCUG. The risk of kidney damage outweighs the unpleasantness of the test for me. (I have 2 kids with VUR.)

[mrsdaksel]

DD was diagnosed with grade 4 on both sides. I am thinking she should do the VCUG. At least then I will know for sure and won't have to freak out every time she gets a fever. I will discuss it more with the pediatrician when we follow up after the course of antibiotics. Thank you so much for sharing your experiences!

[paxye]

Dealing at the moment with a child who has a nephrostomy tube due to a pyonephrosis/hydronephrosis/hydrourerter (basically big kidney infection that was completely contained and could not be treated with antibiotics and needed to be drained by inserted a tube into her kidney through her back) and may very well lose her kidney,  I would say go and do the VCUG. My dd does not have VUR (she has a congenital matformation of the ureter) and I am completely against any types of invasive test without a good reason, but with your other child's history and the potential risk of a kidney infection is she does have VUR, then the test would be worth it. 

One thing that helped my dd when she was doing the test is that we EC, so she was able to pee on cue when it was time and even thought they filled her bladder twice, the test was done within minutes... 

[mrsdaksel]

Originally Posted by paxye 

Dealing at the moment with a child who has a nephrostomy tube due to a pyonephrosis/hydronephrosis/hydrourerter (basically big kidney infection that was completely contained and could not be treated with antibiotics and needed to be drained by inserted a tube into her kidney through her back) and may very well lose her kidney,  I would say go and do the VCUG. My dd does not have VUR (she has a congenital matformation of the ureter) and I am completely against any types of invasive test without a good reason, but with your other child's history and the potential risk of a kidney infection is she does have VUR, then the test would be worth it. 

One thing that helped my dd when she was doing the test is that we EC, so she was able to pee on cue when it was time and even thought they filled her bladder twice, the test was done within minutes... 

I am not familiar with what EC stands for. I'm sorry that your child is so sick :(

[paxye]

Originally Posted by mrsdaksel 

I am not familiar with what EC stands for. I'm sorry that your child is so sick :(

EC is Elimination communication... we don't use diapers and instead we use communication/signals/cues and routine to know when our kids need to potty or to help them go when we need them to (before getting in the car etc) ... so by using that, I was able to make the sound that she associates to the act of peeing and she would know exactly what I wanted her to do and it made things go so much faster as we did not have to wait.

[paxye]

here is the MDC board on EC http://www.mothering.com/community/f/227/elimination-communication

[mrsdaksel]

Thank you so much! I have never heard of EC but will definitely check it out. Is it possible to start when she is already 18 months?

btw...I noticed that Wilhelmina and my DD (Leah) share the same birthday!

[Siennaflower]

Having had two dd's with VUR, I would say it's best to be proactive and test.