XP: Bilateral Hydronephrosis

Sascha3 · September 2013

I have 9 week old twins. During my pregnancy, twin B was diagnosed with hydronephesis on one of her kidneys. It was only 7mm so they felt pretty sure it would go away on it's own after birth. We did a u/s when she was a month old and not only did it not go away, it got larger and is now on both kidneys. It is a grade 3 on the right and 2-3 on the left. We were sent to a specialist who ordered a VCUG (the catheter and dye test to see if there is reflux of urine going back in her kidneys) and the Mag3 renal scan (the iv with dye to check for blockages). We get them done next week. If it is reflux, it could still go away on it's own, although he feels she may end up with surgery being that it is on both kidneys and a grade 3. In that case, he would operate after she turns one. If it is a blockage he wants to operate now.

Have any other moms on here dealt with this? What was the outcome? And how terrible were the tests? I have been sick just thinking about the testing, especially because I have anxiety attacks over catheters. They said they could sedate, but I know there is a risk with that and don't want to put her through extra risk, but I don't want her to be in terrible pain either:(

EmR22 · September 2013

My son has this. On my 20 week ultrasound he had fluid on both kidneys but by my 34 week only one had excessive fluid. He had an ultrasound at 2 weeks and at that point they ordered the VCUG. It really wan't bad at all. He whined when they put the cath in but slept thru the rest of the test. I think getting it in is the worst part (as an adult I know it's uncomfortable but not horrible). In our case there was no reflux so we will keep doing ultrasounds every few months to see if it goes away.

The cath really wasn't bad and I would say my son was never in pain, just uncomfortable when they put it in. Good luck to you, I hope it goes well--let me know if you have more questions.

OntheWater · September 2013

My DD1 had VUR, bilateral grade IV/V. We had quite a ride with it. I certainly don't mean to scare you with this and acknowledge that we have an atypical scenario with this. She got her first kidney infection at 6 months and they rolled in every 6 weeks, despite remaining on antibiotics. One infection was resistant. She has been admitted each time since. They like to wait till 2 years to do the surgery bc success rate increases, but bc of the severity of hers, they did it 2 days before her 1st bday ( happy bday, right?!?!) Surgery was successful, but for some reason, she still got another infection. Almost 4 now and she's been off antibiotics for over a year now and she's been infection free, although every time she gets a 102 fever, we still have to check her urine, which they will ONLY do with a catheter as they want a clean sample. As for the VCUG, they won't remember it!!! But it sucks for mom and dad! It's easier when they are younger. I had milk pumped and popped the bottle in her mouth for comfort while they did it. It got more difficult as she got older and more aware. We did bring a portable dvd player or ipad to put a movie on to try to distract her as she got older (she had several VCUGs). Having urine samples taken with every fever now is, admittedly, horrendous. She's so aware and just screams, understandably. Poor girl. My DD2 (now 6 weeks) got tested at 2 weeks (high ration between siblings) and no VUR! She does have some swelling on 1 side and we have to monitor that every 3 months, but just with an ultrasound as we know for sure there is no reflux (so no need for a VCUG). At 2 weeks, she slept through most of it. Please write back with any questions- happy to answer!

OntheWater · September 2013

Also- your urologist should have a table that shows the likelihood of them outgrowing it by a certain age depending on level and whether its uni or bilateral. You should be able to google it too.

Sascha3 · September 2013

@onthewater Oh no...I'm so sorry your little girl has had such a rough time. It hurts my heart to think of a child going through all these tests.

I don't know yet if hers is caused by VUR. Her hydronephrosis is a grade 3 on the right and a 2-3 on the left, grade 4 is the highest for the hydronephrosis. I guess the VCUG will tell us if it is a blockage or if it is VUR and then we will go from there. She is on daily antibiotics and so far hasn't had any issues but she is only 9 weeks.

I'm glad to hear the VCUG wasn't too bad for her as an infant, but I just pray she won't have to continue to have them as she gets older. I'm sure that must be so difficult for both of you:(

I am sure I will have questions for you going forward. Thank you so much for responding.

Edit: I wonder if they will want to test her twin? She didn't show anything in utero but now I am concerned about that. I will ask the doctor when I see him.

DebateThis · September 2013

@Sascha3 I have (had) hydronephrosis due to VUR and a duplex ureter (it looked like a Y prior to surgery) in my right kidney and the VUR was due to the valve between bladder and ureter being completely nonexistent. It was actually just discovered 2 years ago and since it's usually a pediatric problem, my urologist and nephrologist actually consulted with the head of pediatric urology at UChicago hospital on how best to treat me, lol.

I will say that even as an adult, the VCUGs are really almost painless and not a big deal (it was more embarrassing than anything). I had some discomfort with the surgery (was out of work for two weeks) but even that was minimal. Typically the surgical procedures now are done with a waterproof "putty" substance called Deflux that goes in via a bladder catheter - open surgery is only the treatment of choice for the most severe cases of VUR, which is relieving. More info on Deflux here: https://www.deflux.com/country/usa/?q=node/21

It all sounds so scary, but I hope it relieves you a bit to know that even if it is VUR, it's common and treatable fairly easily.

Feel free to ask any questions you might have.

OntheWater · September 2013

My DD1 is done w the VCUGs now! Follow up ultrasounds only, as with DD2, so I'm very excited. If its VUR, you may want to request a sibling screen. If it's a blockage (which is what they think DD2 has), I don't believe that is a genetic issue. Note though that in utero ultrasounds don't show a lot. Despite the extreme nature of DD1s VUR, no swelling was seen in utero. I agree with PP, I don't think the VCUGs are necessarily painful - just discomfort when cath go in if they fight it and then some discomfort when the bladder is filled to capacity. Deflux wasn't an option for us, her ureters had to be re-implanted, but PP is right, if its to a lesser degree, reflux may be an option for VUR. Keep us posted!!

Sascha3 · September 2013

@onthewater @debatethis Thank you both so much for the info. I know for the short term my main worry was the catheter, but I need to realize that my personal fear and anxiety is the worst part about catheters and she will not have the negative association that I do, so hopefully it will be a quick discomfort. The IV for the Mag3 will probably be worse.

I will keep you posted when I get the results in 3 weeks:)

XP: Bilateral Hydronephrosis

Re: XP: Bilateral Hydronephrosis

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