Hydronephrosis & Vesicoureteral Reflux

Both of my girls were diagnosed. Usually it repairs itself but in our case they both had an outpatient procedure. Up until their surgery they both took a daily antibiotic to prevent kidney infections. We went to Dr. Belinger @ Children's Hospital in Pgh. This problem is pretty common in girls and is hereditary.

C.,

Hello, my name is A.. My son has reflux but his situation is very serious. (It was caused by a blockage below his bladder that was not discovered in a timely manner. Both of his kidneys were badly damaged.)

As some of the other posts said, reflux can often correct itself. I know you are frightened now but try not to concentrate on the bad until you have talked to the doctor. Are you going to Children's in Pittsburgh? Who is your urologist? Have you also been to nephrology? Urology deals with the anatomy of the urogenital system. Nephrology deals with the health of the kidney and its functioning. The docs of CHP are wonderful. Have a list of questions, make sure you ask all of them, and listen carefully. If you do not understand something, have them repeat it. If you are dealing with nephrology, they have a wonderful nurse named MJ. You can call her anytime and she will answer your questions. (I am waiting for a callback now. My son's last bloodwork was not good so I need to find out what happens next.)

Contrary to popular belief, the kidneys are not simple filters. They perform over 120 functions. (Dialysis performs four functions, another myth.) The kidneys affect every system in the body so functioning is very important. However, you can live with one kidney. Is your daughter's condition bilateral (both sides). This will be important so you must find out.

Hydronephrosis means the kidneys have fluid in them. (It is not a back-up into the bladder. It is a backup from the bladder into the kidneys.) All fluid should drain away from the kidneys (the fluid is urine), through the ureters, into the bladder. The fluid collects in the bladder and then empties through the urethra and out of the body (into the diaper in your daughter's case). Reflux occurs when the urine goes back up the ureters into the kidney(s). There are check valves in the ureters to keep this from happening but the valves may not be present or they may not be working. In general, this is what the big words mean. There are surgeries to correct and in many cases the condition corrects itself. While the reflux is the cause, the serious problem is the hydronephrosis. (Hence the reason the nephrologist is important.) Severe hydronephrosis can permanently damage the kidneys. In any case, your daughter's condition was caught early and most likely her prognosis will be good.

Your daughter will most likely be put on prophylactic antibiotics. This is a low dose antibiotic. It will help to prevent a kidney infection which can be very serious. My son takes his nightly. It is part of our routine. (It also cuts down on ear infections so this is a positive. Of course, it leaves him open to antibiotic-resistant infections.) Monitoring will most likely consist of bloodwork, urine collection, and CT scans or Xrays.

The staff at Children's is terrific. The blood draws, while not fun, are handled professionally. They know what they are doing. I always take my son to Children's for his blood draws, it is worth the time and the drive. (Oh and park in the Penn garage if you are going to CHP. That is the outpatient garage.) The catherization is uncomfortable but necessary.

Psychologically, I am sure you are terrified. There is nothing more frightening than finding out your child has a medical problem. It is devastating. It is also very difficult to have to force your child to go through medical tests and procedures. You will always be with your child through it all (except of course the surgery if necessary). The staff will often ask you to hold your child during procedures. I will hold my son's head and his arms if necessary, I will hold him on my lap for blood draws, but I will not restrain him. I ask for another nurse to help. I have been through too many procedures and I could not hold my little boy down for another one. The staff understands.

I have an entire file with my son's medical records at home (separate folders for labs, doctor's notes, CT's, and billing). I also take COPIES of his records whenever I travel. (I do not take any billing records - there is no purpose to this. I take copies of his latest labs, his inpatient/surgery records, and his latest CT report plus the numbers to his doctors though of course these are also on speed dial in my phone.) I wouldn't take the originals with me and I do not carry them around with me. There are copies at his school. Everyone who takes care of him has been told about his condition but keep in mind my son's condition is much worse than your daughter's so I take precautions.

If you want moral support and if you are going to Children's in Pittsburgh, feel free to contact me. I practically live there.

Best of luck to you and your daughter.

A.

My soon-to-be 5 yr old son has this. He was born with it, but it was not positively diagnosed until he was a month old (even though we had been tracking his hydronephrosis in utero). In fact, they never even mentioned any testing until he had a terrible infection at one month old. It reached his kidneys and there was scarring to his right kidney. He lost 17% functioning in that kidney, but the left makes up the difference. He was also born with a third ureter (an extra one on the right side). This in itself is no big deal, but the reflux is. He has been on antibiotics since that time. The original vcug showed his reflux was a grade 5 on the right and a 3 on the left (out of 5). He has had yearly vcug's since then. It improved some over the years, but did not correct itself completely. He had a 3-4 on the right, and a 1 on the left at his most recent vcug, so we opted for surgery to correct it. He had ureteral reimplantation surgery at the end of May. It was very intense, and his recovery was difficult, but he's doing well now. He was terrified going into it, which made it even more difficult. Sometimes I wish they could do this surgery when they are much younger and less able to understand what is going to happen. We will have another vcug in the fall, and if the reflux is corrected he will be able to stop the antibiotics. He then will need an ultrasound a year after surgery to make sure the surgery itself did not cause scarring. If there is no scarring, case closed. He's 'fixed'. He is already very worried about the upcoming vcug. He had a VERY bad experience with one when he was 3 and I don't think he'll ever forget it. My advice to you is to make sure you always go to a pediatric facility for all testing and urology appointments. I didn't for testing, and the result was a very traumatized little boy. The bad experience was with York Hospital's imaging department. Avoid them at all costs (including their Apple Hill facility). I should have filed a complaint, but didn't. They made it very scary and painful 2 times, but the last one was totally unacceptable. Our Pediatric Urologist and Surgeon is Dr Gearhart at Hopkins. I cannot say enough about him, and highly recommend him. He is wonderful. Our last vcug was done at Hopkins pediatric radiology and they are awesome.

This defect did not cause any abnormalities in his day-to-day life other than late potty training (due to the trauma from the bad vcug). The good thing is that your daughter will be fine, even if she does have reflux. Stay on top of any infections because you want to avoid kidney scarring if at all possible. The surgeon told us that my son would be fine because he's not a girl. He might develop early high blood pressure. He said that girls with kidney scarring have difficulties with blood pressure during pregnancy. It can result in them having very high risk pregnancies. I'm only telling you that so you can be prepared and know how important it is to stay on top of any possible infections. There is a chance she could outgrow it, and if not it is correctable with surgery. Open surgery is over 99% effective. There is a less invasive option called Deflux, also. It does not have as high of a success rate, though (I believe it's in the 80's). It was not an option for my son because of the grade of his reflux and his duplicated system. My neice will be having the Deflux procedure sometime soon.

I hope that wasn't too much information. Feel free to message me with any questions you have. I wish you luck with everything. Your daughter will be fine! I love the name Lucy, by the way. :)

Good Morning C.,
My son was hospitalized with a high fever and severe bladder infection at 10 weeks because of the same issue. He was uncircumsized at the time and perhaps that led to the infection but the reflux of urine back into his bladder was definately the major issue. We had him on major antibiotics for a while and many visits with the pediatric urologists at Johns Hopkins but everything corrected itself on its own. We did havehim circumsized at 6 months and he has had no problems since the first bladder infection. The tests we not to bad, a few x-rays, a cathedar and some blood work. the only scary thing was rushing to the er with a temp of 105 and getting a spinal tap, among the other battery of test until they figured out the issue. I am sure everything will work out well, we were never told that this was an issue to be extremely worried about.
good luck.

Our son was born with a pretty severe defect of the bladder, so he has reflux. He takes a daily antibiotic to reduce the risk of infection, but he did have one bad infection when he was six months old. Poor little guy spent Christmas in the hospital until they could get it properly diagnosed and get him surgically catheterized :( Two years later, he's doing quite well (I better go knock on wood). The one thing that I will mention is that some of the best pediatric urologists in the world are at Johns Hopkins in Baltimore. If this turns out to be aything more than a routine case for your urologist - ask how many children (s)he has treated with this condition - I wouldn't hesitate to get a refferal to JHH . . .

I have not had any direct experience, but a friend mine's daughter went through it. It depends on the severity of the bladder reflux, sometimes if it's not too severe the doc will just wait for the child to outgrow it. If that's not the case, it's treated with antibiotics (for UTIs), and if it's really bad it's treated with surgery. I remember she told me it is rated from 1-5, with being the most severe which requires surgery. Do you know if your daughter has had a UTI or any other kind of infection? That could be painful, although I'm not sure what you could do for a 4mo old except antibiotics. Good luck and let us know how she does!
Also, here's a link I found for my friend that seemed informative.
http://www.childrenshospital.org/az/Site1962/mainpageS196...

good morning C.,
not sure ; I will do research in a few minutes.
just wanted to say ,' I love your childrens names .'
daddy has a strong name too...
at this point , all I know is take your children [ always] to a board certified dr. for every thing .
good luck .
grammy

well C.; I completed the research . first of all ; was Lucy diag. in the womb ? how lucky to find out early .
now ; dr.'s want a 'success story '. I donate always to c.h.o.B. , c.h.o.p., and st. christopher hosp. , phil.[ been to all of them often] -chop advertizes on this site[ mama source] all the time .
listen to the dr.'s . ;if something is not sit'n well with you c-a-l-l the dr. ,find a local dr. who will corespond w/ your major board certified dr. specialist [ for THOSE panic days; they do happen] ,pray for non-invasive procedure for Lucy [ I will] .........
start a waterprof folder [ zip lock too] place EVERY PEICE OF PAPER WORK FOR LUCY IN IT [ BILLS, MEDS, DR. ETC] KEEP THIS IN HER CAR SEAT [ TUCK UNDER IT] , DIAPERBAG, ... DO NOT LEAVE HOME WITHOUT IT .!!!!!!!!
THIS WILL be ADVANTAGOUS TO ALL DR'S, a COMFORT TO BABYSITTERS, AND ALL ANSWERS ARE IN THAT BAG ....!!!!!!
TRUST ME .
START A BAG FOR TOMMY TOO . [ SO WHAT IF IT IS EMPTY] !
May God give you guidence, take away your tears , kiss up those 2 babies ........and watch them grow .
kindly,
a grammy with many
baby/children traumas.

My sister had SUA when she was pregnant. This caused my nephew to have hydronephrosis. He is 6 months old now. She takes him to childrens hospital to have frequent checks of the fluid. He has been on antibiotics since he was born. From what i understand they may eventually take the kidney. His fluid has steadily increased since he was in the womb :(

He is a very happy and healthy little guy and i am under the impression that this is not too serious. I wish you lots of luck with your little boy.