Kidney reflux

Well we did Iris' tests today. She has kidney reflux (vesicoureteral reflux), meaning that urine backs up from her bladder into her kidney again. You can have Grade 1-5 (5 is most severe), and she has grade 4.

The usual treatment is low-dose antibiotics until she outgrows the problem (between ages 3 and 6) but her case may be serious enough that she will need surgery.

So that's the scoop. Not exactly good news, but of course it is a problem that can be readily corrected, and we should be glad that we caught it early, because especially with grades 4 and 5 serious kidney damage is possible.

I'm posting this thread in case any of you guys have dealt with this. It's not extremely common, but its not super rare either, so probably someone out there knows what I'm talking about.

And even if you don't, we welcome your prayers and good thoughts!

jennye's picture

I'm glad we know what's wrong. Now just to get it fixed! Hopefully the meds will work and surgery won't be required.

Vonnie's picture

They thought that our DD had that & she went through the tests as well. It turned out that she did not have it, but we were pretty worried because she only has one kidney. When she was born (in Russia), her right kidney was diagnosed with hydronephrosis. Since she was an abandoned child, they were not willing to try treating it, so they just took it out. Now, she has one kidney (her left) and we keep a very close watch on it with a pediatric nephrologist. It does have a cyst on it, but it appears that it may have been there since birth and is not growing. The ultrasounds show that it is getting smaller in relation to her kidney.

Nonetheless, my thoughts & prayers are with you that the meds will work and there will be no damage and no surgery.

Vonnie

heidic's picture

Shaun,good that you have an answer and diagnosis. I bet the web has lots of info or maybe you already looked that up now that you have a name. I wish her the best and you I wish strength. Keep us posted.

Heidi

Jana's picture

kinda unknown. How old is she again? Will she be continually on meds or just when is flares up (???)? Surgery is always scary with your kids. We went through that last year with DS4. A hernia surgery. Fixed the problem but there was always a chance that they could get in there and find it was worse. Ours was mild and I was a wreck! Worries a mommy to death, so you and your family on my prayer list!

Jana

Kelly Claibourn's picture

My daughter Charly got sick last September after a trip to the ER. She was admitted in the hospital for a week. We got sent home with antibiotics (Bactrim), which I was to give to her until it was all gone. When she was in the hospital they did a few test that were very uncomfortable for her. It just killed me to see her in pain. When she completed her medicine she seemed fine so I didn't make her appointment to have a MCU. I didn't want to put her through that to have them tell me "make sure she urinates frequently and not to give her baths with bubble bath, etc." 2 weeks after she completed her antibiotics she got a very high fever again, yep another trip to the ER, which at this time the ER doctor explained to me what reflux was. I scheduled her an appointment to have a MCU done and the test came back positive for kidney reflux grade 5. We then put her back on bactrim she took this everyday. The doctor said she would probably grow out the it. She took the medicine for 10 months and when we slowly took her off it because of her improvement. She has been off them for 4-5 months now with no problem. UNTIL last night we made another trip to the ER and she has a UTI. I am now going to try to get her scheduled for surgery. Hopefully this will take care of the reflux. So I send you my prayers. P.S. I had my 5 yr old daughter tested (Kidney ultrasound) and she shows no sign of reflux.

Andrea's picture

Yes Shaun, thoughts with you .. . like everyone says, it is good to know.

jamielea's picture

for you, your family, and most of all Iris. :)

Becky's picture

Especially when it's readily correctable. I'm glad about that part.

Honey's picture

Thinking of Iris and you all.

silverbear's picture

Sorry to read about Iris's health problems. When will you know if surgery is required?
Rose

lgunnoe's picture

...both on Iris's course of treatment and on how best we can support you. Children are so wonderfully designed as to take much in their stride....but mamas....that's another story.

We're with you in heart and spirit, Shaun!

Blessings,
Lenora
Love nurtures, develops, cares for,
Shelters, comforts, and makes a home for us.
~Laozi

Susannah's picture

I'm praying for you all, especially little Iris. May you be kept in perfect peace! I hope you can settle on treatment soon.

Love,

Susannah

Shaun's picture

We've lucked out, after asking around we have talked to a few people who can help refer us to an excellent pediatric urologist. We're also really lucky to live in an area with great children's hospitals! We'll have to meet with him/her before we know for sure how to proceed, but because she is so young chances are good that she will take antibiotics for a couple of years before they consider surgery. According to our regular pediatrician, they want to give her every opportunity to grow out of her condition without surgery. But the urologist will have to look at her individual x-rays and labs and see. That will probably be a few weeks from now.

I really appreciate your thoughts and prayers! You guys are so right, the babies just bounce right back and toddle on their merry way, but as Mom I read and worry and research and of course remain "calm" during medical procedures and reassure big sister that everything is fine, which as you all know gets exhausting!

Vonnie, how stressful for you! Iris has moderate hydronephritis, but for now they are content to let it subside on its own. (Layman's terms, the extra fluid causes some dialation of her parts beyond their normal size.)

I sure don't like the idea of daily antibiotics for years, but we looked at the risks and it seems well worth it. If we keep on top of it she should be fine, maybe even outgrow it before she is old enough to remember much about how she gave mommy so many gray hairs!!

And one thing about those children's hospitals, you always see families worse off. We can be really grateful for excellent care and early diagnosis and good medicines.

Shaun
"If you jump off the boat, you only rock it once"

Lynn's picture

John (dh) had this; it didn't manifest until he was 12 or so, at which time he got so sick he nearly died, but that was mostly because it was ignored until it was almost too late. He's got "plastic plumbing" now and he's fine. Hugs to you, Shaun, and you too, Vonnie. I thank heaven my girls are healthy and pray they stay that way.

Lynn Siprelle, Editor

Srini from India's picture

Hi All,

My Son Navaneeth - 4yrs Old got Reflux of Grade 3-4 on right side. My Consultant Pediatric Urologist suggested for re-implantation surgery. But I am thinking of trying a medication on prophylactic antibiotics for an year.
This is the first time he got an UTI.

Appreciate your valuable suggestions on this.

Maddydex , finetune8, shaun and all whoever kid's undergone the experience of Reflux,

How is your kids now? Hope all went on well with grace of almighty.

Pl. respond

Ginger08's picture

Well Im new here, and Im on here because of this discussion on this forum. I found out my dd, who is 7.5 (the 1/2 is very important to her!) has grade 2 reflux just within the last couple of months. We were told this last monday that she is now scheduled for corrective surgery the 20th of December. I am scared to death. I was too dumbstuck at the time to even think to ask questions, and the more I read on the internet, the more worried I am getting. The ped. Urologist that will do the surgery says he does about 50 a year, and it will be done at a good hospital...but.....this is major and I am trying to keep it together and I dont want to break down. I was told this isnt going to go away, since she is 7. She has been on a preventative med. for about 2 months now. Before that is was one UTI after another since last Nov. Sad to meet with you all this way, nice to know Im not as alone as Im feeling.

Shaun's picture

I must have missed the other updates to this thread--9/23 was our 10th wedding anniv. and it was a busy weekend!

Our meeting with the recommended pediatric urologist led us to choose antibiotic therapy for now. He indicated that if we saw no progress at all, that would mean doing surgery sooner rather than later. He said the chances that we will eventually do surgery are about 70% given her age and the level of severity, but still it is worth trying the antibiotics and watching for improvement first. If she ever has another infection while taking antibiotics, we will go straight to surgery. One concern is that if you correct it too early, the child's growth may necessitate another surgery later.

For the record, the urologist's reading of the x-rays was a grade 3 on one side and grade just-barely-4 on the other, slightly less severe than the radiologist's take. That was at age 20 mos., which is fairly old in terms of the improvement one would expect to see if we had diagnosed her at birth or shortly after. That's what makes the necessity of surgery seem higher than it would if she had been diagnosed with that degree of severity at, say, 6 mos.

It may be total coincidence, but several people have commented in months past about how much healthier Iris looks and acts since we started treating her with low-dose antibiotics. We have had no adverse reactions to the medicine. You do have to be absolutely 100% consistent about it. Inability to be consistent with the medicine is considered an indication for surgery.

I hope all goes well for you, Jenny. Please let us know how the procedure goes!

Shaun

maddydex's picture

Hi Shaun,
I'm really curious to find out what you decided to do about the reflux. We found out my daughter had reflux a year ago, and she has had no improvement since. The severity is a 3-4 on one side, and a 1-2 on the other side. At this point we're trying to decide which type of corrective surgery to go with, and I'm looking to talk to as many parents as possible to help make the right decision. My e-mail is kjcb@comcast.net, if you'd like to talk about it.
Thanks,
Jenny from Colorado

Lynn's picture

I would post with my own acct, but I forgot the password.

I got this around 10 years old, and its nasty. Saps all the energy outta ya. Your back hurts at all hours of the day and night, and laying down does little to prevent it. Low grade fever, frequent urination with a persistent need. Yes, meds do help, but if the problem doesn't go away, go for the surgery(s). Trust me, your daughter will thank you for it...but not until she gets into her 30s.

This is one thing to remember tho: the surgery is radical, but the advances in medicine, materials, anesthesia, just general care mean a fundemental change in the quality of care. All this in just 22 years.

I have another surgery to look forward to before I pass on as the plastics they used in me back in the early 80's were pre silicone, and frankly rather primitive. They were not expected to last the lifetime++ that plastics now last.

What is the saying? "we live in interesting times" in many ways.

michelleW's picture

Hi Jenny,
I started lurking here when I did a search for kidney reflux and stumbled onto this site.
My daughter was diagnosed at 2 months with it and finally outgrew it this year after she turned three. I was ready to discuss surgery options with our doctor. I was afraid of the long term effects of the medication on her stomach. I have a friend whose daughter had the surgery last fall in Portland, OR and she is doing great. Not sure if any of this helps but our dr told us every year that she would most likely outgrow it and he was right. Have you seen a Pediatric urologist?
Michelle

Guest's picture

My daughter just had surgery last month to correct the reflux on the left ureter. She was diagnosed with reflux (grade 3-4) on both sides at 5 y/o, she grew out of it on the right side! So, there is hope that some will grow out of it! The surgery revealed there was no damage to the kidneys, thank the Lord!! This was a difficult time for us, it is so hard to have your precious little one hurting, but we got through and so will all of you out there! Ask alot of questions of your doctor so you know what to expect. Before her surgery last Tuesday I told her, "no more tubes after this!" well, the doctor told me afterword that she would need another VUCG to see if everything was a success. I am so stressed now because, those tests are uncomfortable for her and she thinks we are all done. God will see us ALL through these trials!! Have faith everyone, we will pray for everyone because we know it isn't easy!!

 Kelly Cano's picture

My Sophi was diagnosed with mild hydronephrosis in her left kidney in utero and had a vcug at one week, which showed reflux in both kidneys, we were told to prepare for surgey on he rleft to correct it and at 6 weeks of age had a renal which showed no kidney function in her left kidney. Her reflux is stage 2 in her right. I am simply terrified . I went for a second opinion who said stay on antibiotic treatment and it will fix itself. they said this about the left and now it has to be removed. I and am going with first Dr.'s opinion, a pediatric urologist who we respect, to remove the non-functioning and inject a deflux into her right as this has an 80 percent success rate. My Sophie's kidney went from mild to non-functioning in just 6 weeks. This is not the norm but make sure you have a dr. who watches your little ones closely to prevent this. My DD's surgery is Dec. 21st. Please pray for her. Thank you for sharing and I will pray for all your little ones. It is so hard when your little one is not well.

Kelly CAno

michelleW's picture

Does the dr giving the VUCG give her medicine so she will 'forget' the test?

MichelleW

finetune8's picture

Kelly,
HI! I posted under the topic "Children's Health" my son's story about kidney reflux. If you get a chance please read it. He was born with reflux grade 5 in his right kidney and then a year later diagnosed that the overflow of urine was creating grade 2 relux in his left kidney. He has been on a daily antibiotic (Bactrim) just like Charly since the day he was born. We were told to give him his antibiotic daily until x-rays/renal/VCUG or nuclear optogram tests showed his reflux was gone. We were also told that his chances for out growing this is VERY slim since he has the worst grade. I am in the process now of getting second and third opinions from doctors to determine when and if surgery is his best option. I'll know more after Dec. 13th and I live in North Carolina where there are AWESOME hospitals. So I will let you know what I find out. Sincerely with Blessings,
Nicole (Finetune8)

michelleW's picture

Kelly, Have you seen a Pedactric Urologist? How old is Charly? We we told to keep our daughter on the meds until she had a good VCUG. Since our daughter was so young they were sure she would outgrow it. She had a grade 4 on her left side. This last May she finally had a good VCUG, just when I was going to demand the surgery. I would only do the surgery as a last resort. I wish you the best of luck. I know the tests can be very hard on everyone. If she needs more tests ask for the medicine that makes them forget. I am sorry but I can't remember it's name. It works great.

maddydex's picture

Yes, we've met with 2 pediatric urologists, and have decided to try the deflux procedure before going in for the full surgery. It's a 20 minute procedure, and the urologist says chances of it working are about 85%. We're praying it works! Brenna was diagnosed at 18 months, and at 2 1/2 she showed no improvement. We're having it done the end of November.
Jenny

sarahj's picture

You must be talking about Versed? Wish I would have thought to ask for it. She had her VUCG on the 18th. It was the "straw that broke the camels back". She is a very modest girl, and she decided she didn't want to do it! HUGE struggle! Glad it is over. She will go back to the doc next Thursday, and I am praying that everything was a success. So glad that your daughter "grew" out of it. What a traumatic experience, eh?

Guest's picture

How did things go with your daughters surgery? I am curious to talk to other parents that have been in similar circumstances. My daughter had surgery the 8th of January, she has improved but still hurts. Look forward to hearing from you when you have time! God Bless you, Sarah

Ronika's picture

HI, Shaun

I read your article about your little daughter and I wanted to follow up as how her health is at the moment. My baby is 10 months now. Baby boy: Neel. He was first dignosed with uti when he was 7 months old which is when we found out that he has grade 3 reflux in his left kidney and his left kidney is smaller then his right one. Over the 3months period we have visited the hospital 3 times with constant uti's. The doctors want to preserve his left kidney so they haveput him on antiboitics which worries us. Please email me on the email narmi_26@hotmail.com. I would love to talk and get to know more of what I can do in terms of geting Neel better as soon as possible.

thanks
Worried Mom, Ronika

nina's picture

I am happy to have found this site... My daughter almost 3 has had reflux since she was 8 months old.. Treated with daily antibiotics ( Bactrim) we have had RNC for the passt 2 years, she has gone from a grade 4 to 2/3 however has stayed at 2/3 for the past year. Just had a month long UTI caused by ecoli,which Bactrim does not treat. No matter, went back to the Urologist at Childrens Hospital and they recommended surgery, due to the fact that there has been no improvement and she had a month long UTI with 3 different antibiotics. I am very upset and nervous about this, I dont want to jump into surgery prematurely, however I dont want to risk her health either. I have no choic but to keep her on the anitbiotics, but they are doing on job on her belly, constantly has pain.. Any feedback/suggestions welcomed. Thanks

Guest's picture

My son was diagnosed with VUR when he was four years old. HE never had a positive UTI but under anesthesia for sinus surgery when he was one he had extremely high blood pressure. After three years of doctors and cardiologists telling me that Jacob was just scared of doctors and nursed and thats why his blood pressure was high he saw a new doctor when his regular pediatrician was unavailable. She was very concerned about his consistantly high blood pressure and ran a bunch of tests. Turned out he had stage five VUR, which had been left untreated for three years. This caused renal scaring and high blood pressure. His kidneys are permanently damaged and he will be on medication for the rest of his life. He had a laproscopic procedure called Deflux that was minimally invasive and after 18 months his VUR has not come back. I owe a debt of gratitude to that new doctor who by the is now his regular pediatrician. The deflux fixed his VUR but I will always be vigilant about his healtcare and I always ask a million questions of the doctors he see's. If I am not satisfied I get another opinion. Good luck with your daughter. If she does need surgery the deflux was for Jacob the better choice over open surgery and he went to Chucke Cheese later that same day.

Nina 's picture

Thank you for sharing your story with me.. Wow that is really unbelievable, so glad you found a great doctor that has helped your son, its just unfortunate that it wasnt caught earlier. Glad that you have a through new Doc and the Deflux treatment worked.
We just met with my daughters Dr. again today and he still encourages surgery. What has me crazy is that I called the head of pediatric Urology of another hospital, and he actually called me back. He had a totally different perspective on my daughters situation and he uses different tests-VCUG and Ultrasound before any surgery, whereas the other dr only did an RNC ( VCUG when she was a baby). The dr I called said that the RNC is not a good diagnostic test for Reflux and he also suggested a DMSA.I also told him that she had the RNC the day after she finished her course of antibiotics and he said that we should have waited 3 weeks before having that test, due to inflammation in the bladder from the infection. He suggested to postpone the surgery and get some additional testing. My husband feels that no matter what it will come back to surgery. I just want to be sure I am with the right Dr and hospital. I dont know what to do here, I dont want to subject her to additional invasive testing, however I want to make sure that all the details are accurate and true. And the risk of postponing the surgery in the event she gets another UTI. Sorry for the venting... had to get that out.. Thoughts welcomed.

Jenny in NC's picture

Hi, just wondering if anyone can help me. My eldest daughter had a bilateral ureteral reimplantation when she was eight so we had her two sisters (ages 4 and 6 months) tested and they were fine. Four years later my youngest who is now 4 1/2 has had 3 urinary tract infections so we had a 2nd VCUG which came back that she had grade 3 reflux on one side. I thought this was a condition you were born with. Is it not? I would think this is a hard test to botch, seems like you either see it or you don't. Can it worsen over time? I keep reading that a lot of kids grow out of it so I'm confused. I don't want them to just put her on an antibiotic and it get worse. Anyone have any ideas?

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