Tag Archives: vur

Constipation and Reflux, What’s the Connection?

We were well into Lizzie’s journey before discovered there was a connection between constipation, voiding dysfunction and vesicoureteral reflux. It was first mentioned by the urologist that we saw for a second opinion. I was surprised when one of the first questions he asked was if she had any problems with constipation? Too be honest, it left me scratching my head for a minute. Does she have problems with constipation?  I didn’t really know She was constipated at times, but no more than any other kid I guess, why did it matter?

After discussing some of the issues related to constipation and reflux, I began to realize that the answer to that question was pretty important. Even mild, sporadic constipation could have negative effects on Lizzie’s urinary system. I went home and started doing some research. I needed to understand why it caused problems and what I should be doing to prevent it. I was surprised at the amount of information out there. How had I never seen any of this, and why had no one mentioned it before? What I discovered is that parents of children with kidney reflux need to be especially diligent when it comes to constipation. Not only is constipation uncomfortable for the child, but it can lead to recurrent urinary tract infection, and may actually delay the resolution of reflux among other complications.

Constipation is defined as a very hard stool, pain that is associated with passing stool, or failure for a child to pass three stools in a seven day period. So what is it about constipation that makes it so dangerous for children with reflux? When a child is constipated, the stool that is impacted in the rectum compresses the bladder, which can reduce the capacity of the bladder and give the child an earlier sensation to void. This can in turn prevent relaxation during voiding which can cause urine to remain in the bladder after voiding, which basically means that the bladder does not empty completely. The danger is that the longer urine sits in the bladder, the greater chance bacteria has to colonize in the urine, which can lead to urinary tract infection.

Another theory is that once a child has had a painful experience passing stool, they are more likely to withhold stool in order to avoid another painful experience. This starts a vicious cycle of further constipation, and other complications. When a child withholds stool, they will usually withhold urine as well. Again, this leads to pressure on the bladder, and urine being left in the bladder. Voiding dysfunction is cyclic and can be hard to treat once habits have set in.

I began reading about how voiding dysfunction and constipation are closely linked, and when seen together, they are referred to as Dysfunctional Elimination Syndrome (DES). This is one of the articles that I found very interesting. It discusses the impact of constipation, dysfunctional elimination syndrome (DES) and Vesicoureteral Reflux specifically. It talks about a study that showed for patients that did NOT have DES, only 18% experienced breakthrough UTI’s and eventually needed surgery. Kids with breakthrough UTI also had a much higher rate of DES, 77%. Many of the children that were able to control their DES, also helped in resolution of reflux. Even though this was a small study, I found these statistics pretty significant.  I immediately saw the importance of treating constipation and voiding dysfunction.  The article went on to talk about how the resolution rates of reflux are delayed in children with DES. Resolution rates are lower and slower, and may take an average of 1.6 years longer for reflux to resolve. That’s a long time when you think of the chances of recurrent infection, as well as all of the testing and antibiotics required to manage VUR.

Now that we understood the importance of eliminating constipation, our next step was trying to figure out what steps were needed to manage it and prevent it. We quickly realized that this was sometimes much easier said than done.

The first thing we did is increase Lizzie’s fiber intake by adding more fruits, whole grains and vegetables to her diet. We also decreased some of the more binding foods, like bananas and cheese. We increased her fluid intake which is a big key to treating and preventing constipation. For a lot of children, changing diet may be enough to keep the bowels moving well. For others, a supplement may need to be given in order to keep the stool soft. Our doctor recommended Miralax, which is given daily.

For severe constipation, or impaction, a child may need multiple high doses of Miralax or stronger methods in order to clean out any impaction before starting a daily routine. You should discuss dosages with your doctor, and may also want to discuss doing an x-ray to diagnose impaction.

Lizzie still sometimes struggles with occassional constipation, but by changing her diet, increasing her fluid intake, and using Miralax daily, we have eliminated a lot of her constipation issues. I believe that in our daughter’s case, this has also helped relieve some of her bladder spasms which can also be caused by constipation. When I first started reading about all of this, I didn’t even realize that my daughter was having any constipation issues. Now I feel like we are taking one more step toward helping her body heal, and giving her a greater chance of resolution.

Lizzie’s Journey with Kidney Reflux

Our little Lizzie was born in April, 2007. She was a perfectly healthy, beautiful baby girl weighing 7 pounds and 7 ounces. She completed our family of four, and we could not have been happier. We had no reason to suspect that she had any medical problems, and had no idea what our future would hold.

When Lizzie was six weeks old, we decided to visit  family about 3 hours away. My sister was having her fourth baby, and my brother’s wife had recently had her first. We had all shared our pregnancies together, and I was excited to have all the new babies together. I will forever be thankful that we made that trip.

While we were visiting, Lizzie slept through the night for the first time. She usually nursed at least once or twice through the night, so I was surprised that morning when I had to wake her to nurse. She ate well, and I chalked it up to excitement, and a change in schedule. We were all a little exhausted. She continued to sleep a little more than usual that day, but she seemed happy and content when she was awake. She wasn’t too interested in nursing, but she ate ok, and I didn’t think much of it. After all, she was a fat, healthy baby, so it just seemed like normal six week old baby stuff. That evening things began to change.

She felt a little warm, so I took her temperature, 99.5 F, nothing to really worry about, but I was becoming a little concerned. A short time later, when I felt her forehead, she seemed very hot. Her fever had spiked to 103 F and we went immediately to the nearest Children’s Hospital Clinic. It was only then that I began to realize how serious the situation was. Both the doctor and nurse were obviously concerned, and left the room to make phone calls. A few minutes later we were taken by ambulance to the nearest Children’s Hospital.

My world was turning completely upside down. I will never forget how absolutely tiny she looked sitting in her car seat, which was strapped to what seemed like an enormous gurney. It was completely surreal and absolutely terrifying. No one would tell me what might be wrong, or what we might be facing. I have never been as frightened as I was that night.

In just a few short hours our lives were changed forever. When we arrived at the hospital we were met at the door by a medical team and immediately taken to a room where they started an IV, and began running tests. I had no idea what to think or what to do. It was obvious that something was very wrong, and I had no idea what. It was all happening so fast, and no one could give me any answers. She was started on antibiotics, and by morning they had done multiple tests, chest x-rays, and a spinal tap. We were so disappointed and worried to discover that they still didn’t know what was wrong with our little girl.

The next few days were an exhausting roller coaster of ups and downs. They discovered a heart murmur, but were unsure if it was related to the infection or due to a problem with her heart. Her heart rate was very fast, and she was kept on a heart monitor much of the time she was hospitalized. For a while we were more concerned about her heart than her infection, and were thankful when her ekg later came back normal. The murmur was eventually attributed to the infection. We still weren’t sure what was wrong with our little girl, but we were beginning to rule out some of the more serious conditions, and the antibiotics seemed to be fighting the infection, whatever it was. Things were starting to look up.

On her fifth day in the hospital, Lizzie had a test called a VCUG and we finally discovered what had made our little girl so sick. Lizzie had a condition called Vesicoureteral Reflux (kidney reflux) and it had caused her to become very ill. A bacterial infection which had started in her bladder as a UTI had moved into her kidneys and was spreading throughout her body. Because she was so young, her immune system was weak, and the infection was moving into her other organs. We were very lucky to have gotten such wonderful medical care so quickly. I refuse to think about how different things might have been if we had been at home with just a small town hospital.

Too be honest, we were relieved when we first found out that Lizzie had kidney reflux. Yes, our child had a condition that can be very dangerous, but with early detection and the success of surgery, this was very good news compared to some of the other conditions that had been discussed . Lizzie had the most severe grade of VUR, and it was affecting both of her kidneys. We also discovered that she had an additional ureter on the left side and later found out that she had an additional ureter on the right side as well. We knew this might make surgery a little more complicated, but it doesn’t often cause a lot of complications. VUR would require her to be on daily antibiotics, and she would need surgery a few years down the road, but it was a very treatable condition, and we had time. We weren’t looking at surgery for another 3-5 years, and until then she would just require monitoring.  We could handle this.

She was released from the hospital on daily antibiotics, and she recovered quickly. She was growing, gaining weight and tolerating the antibiotics well. We were surprised seven weeks later when her fever spiked again. Another trip to the ER revealed another infection. After talking to her urologist and having another ultrasound, we were confident that by changing her daily antibiotic we would be able to keep her healthy. She was now 3 months old, and could take a stronger, more effective antibiotic which would hopefully keep her urine sterile. We were again very hopeful.

You can imagine my surprise and frustration when just a few weeks later, she showed signs of another infection. Multiple doctor visits and catheters later, we discovered that this time she had a resistant strain of bacteria which would require a hospital stay for IV antibiotics. After the first few days in the hospital, we were given 2 options. We could spend the next 8-10 days in the hospital, or she could have a pic line put in. A pic line would be a longer term IV through which we could give her the antibiotic infusions at home. It was a pretty easy decision to make at the time. If you’ve spent any amount in of time in a hospital, you know exactly what I mean. The following Monday she had her pic line placed. As always, she was amazingly patient, and she did great with the procedure, she has always been such a little fighter.

Before leaving the hospital, we spoke again to the urologist, and agreed that it was time to schedule her ureteral reimplantation surgery. We expected to have 3-5 years to think about this surgery. Instead she would be having her first surgery when she was just 5 months old. I was so sad and so scared for my baby. She seemed so small and fragile. I dreaded every part of the surgery, but I was also hopeful. This would finally mean no more infections, no more hospitals, and no more antibiotics. Lizzie would be a healthy little girl and we could put this behind us. I was really looking forward to that new chapter in our lives.

Before we made it to our surgery date, Lizzie had another infection.  Because of the infection , we were admitted to the hospital 24 hours before the surgery so that she could receive IV antibiotics to ensure the infection was gone. The next morning, our baby girl went in for surgery. She would have her ureters removed from her bladder and reimplanted back into the bladder in the correct place. The surgery is up to 98% successful and generally has few complications. Regardless of the statistics, as a parent you are always terrified. Placing your child in someone else’s hands for surgery is the hardest thing that I have ever faced. It was the longest 5 hours of my life. We hadn’t expected such a long surgery, but during the procedure, they found a fourth ureter which also needed to be reimplanted. I can’t even begin to describe the relief that I felt when the nurse came out to tell us that the surgery had gone well, and that we could see our baby.

Lizzie is an amazing little girl. She woke up from her surgery and began nursing right away. She struggled with dehydration and bladder spasms for a short time after the surgery, but after 2 days we were allowed to go home. The first week or so was hard, but I was surprised at how soon she was back to her happy, loveable, healthy self. The surgery was deemed a success, and we believed that our journey with VUR was finally over. Little did we know that our journey had just begun.

I was completely blindsided by her next infection. I just didn’t expect it. I remember taking her temperature and having this horrible feeling in the pit of my stomach. How could this be happening again? And why is it happening to us? After having another long conversation with our urologist, we were assured that this wasn’t terribly uncommon within the first 6 months after surgery.  We shouldn’t worry just yet. According to him, her body just needed some time to heal. This infection could be from swelling, or bacteria in the incision, or any other number of things. He assured us that it didn’t automatically mean the surgery had failed. We needed to stay optimistic. Her renal ultrasound looked good, and we would once again try changing her antibiotics and crossing our fingers. I tried to be optimistic and believe what he was saying. I had done enough research to know that he was right, the statistics say 98% success rate.  But it just didn’t feel right. Something else was going on with Lizzie, and I desperately needed someone to figure out what.

I have to admit, that I really wasn’t that surprised when, like clock-work, she got another infection 5 or 6 weeks later. I tried so hard to believe what they were telling me about the surgery, but I just knew deep down that something wasn’t right. Sometimes a mother just knows.  After this infection, we did another VCUG to see if we could figure out what was really going on. Her VCUG revealed that she still had high grade VUR, and her diagnosis remained unchanged. Her ureters were now in the correct place, and there was no real explanation for why her VUR had persisted, or why the surgery had not corrected the problem. So now what?

Our next step was to begin rotating her antibiotics weekly to try and keep the urine sterile, which of course did not work. Now she was having increasing bowel issues and yeast issues, and by the time we turned around, she had yet another infection. I was at at the end of my rope. To make matters worse, this time it was another resistant bacteria which would require another hospital stay and another pic line. I couldn’t believe that we were right back were we started before the surgery. In all honesty, I felt like we were going backwards. We still had no resolution of the VUR, she had now developed mild hydronephrosis and an enlarged bladder and here we were with more questions than answers.

This time the pic line placement did not go well, and I vowed to do all I could to never be in this situation again. It was a horrible terrible experience and I was determined to find answers.  We needed to be aggressive, much more aggressive. Each new infection could potentially permanently damage her kidneys and cause more complications. Studies show that kidney damage is most common in children under the age of 1, during active kidney infections. Lizzie was only 10 months old, and she was racking up the infections one after the other. Lizzie’s kidneys continued to look good on ultrasound, which we were very thankful for, but we also knew that one more infection could change that. We were desperate to find a way to keep her kidneys safe.

Our next step was to have a video-urodynamics study done. This test would show if there were any problems in her bladder that might be causing her reflux as a secondary condition. Much to our surprise, her bladder was working pretty well, but was grossly enlarged. It was so large, that the nurse actually stopped the test before the bladder was completely full, because she was afraid of doing damage. At this point, we decided that until we had more answers, the best way to keep her kidneys safe was to have a cutaneous vesicostomy put in.

When Lizzie was 11 months old, she had her second surgery which would include two surgical procedures, one to put a vesicostomy in place and another to administer a Deflux injection. The vesicostomy is a urinary diversion that would divert her urine through her abdomen so that urine could not reflux into her kidneys and cause damage. This way her bladder would remain empty, making it harder for bacteria to colonize and harder for urine to move into the kidneys. We were hopeful that this would stop her constant kidney infections, and buy us some time to find answers. The Deflux injection was done as a kind of Hail Mary. The hope is that it might reduce the reflux, by building a flap to prevent urine from entering the ureters. This is not commonly done for grade V bilateral reflux, but because she was already under general anesthesia with an incision in the bladder, we decided that there was little risk in performing the procedure, and we’re keeping our fingers crossed that it might even work.

The vesicostomy has worked better than we could have ever imagined, and has been a true blessing to our little Lizzie. Since her surgery she has not had a single urinary tract infection, which is obviously a huge thing for us. I can’t say it is always easy, but it is always worth it. Always.

Lizzie is about to turn four and she is doing great. Since her last surgery, we have continued testing and looking for answers. She had an MRI to rule out spinal abnormalities which can sometimes cause urinary problems. We were thankful when the test showed no abnormalities. She also underwent a DMSA scan which showed no significant scarring in the kidneys, which, too be quite honest is really a miracle. She does have some abnormalities in her kidneys. One kidney is much larger than the other, and the opposite kidney is being bent by pressure from her spleen. The good news is that the overall function of her kidneys is good. One is functioning at 41% and the other at 59%, keeping the overall function to 100% which is great! We recently had a scare with her blood pressure, but after further evaluation, we feel like it is remaining within the normal limits so for now we can let it ride, and just continue to monitor it.  We also continue to monitor her immunity system.  She has some mild immunity issues, but even her immunity issues have been significantly reduced since taking her off of daily antibiotics.

Lizzie still has an uncertain road and a long journey ahead of her. We have recently made the decision to take down her vesicostomy, and she will have surgery in June of this year.  It was a big decision, but we feel like it’s time, and we are glad to be moving forward.   Our hope of course is that when they take down the vesicostomy her bladder will work properly and that the reflux will have been corrected or resolved.  Unfortunately we have no way to test either of those things because of the opening in her bladder, which is just a little ironic if you think about it.

Removing the vesicostomy will hopefully be a positive experience, but we have to also be prepared for the fact that it could mean that the infections come back.  If they do?  Well, we’ll cross that road if we get there.  It certainly wouldn’t be the first time we’ve faced tough obstacles.  For now I’m doing my research,  looking forward with hope and expecting great things.  I’m also making sure to take time out along the way for Lizzie and I to stop and smell the roses.

For more information on Kidney Reflux click here.

What is Kidney Reflux?

When our daughter Lizzie was diagnosed with Vesicoureteral Reflux (aka Kidney Reflux) we had no idea what that meant.   I had never even heard of kidney reflux and I certainly didn’t understand all that the doctor was telling me.   Our 6 week old daughter had been rushed to the Hospital with a high fever and had been put through a number of tests.  Now they were telling us that she had this condition called reflux and that it would probably require surgery somewhere down the line. In what seemed like a moment, our lives were changed forever. We now knew what was wrong with our little girl, but we still had no idea what that meant or what we could do to fix it.  And so our journey began.

Vesicoureteral Reflux (VUR) is also known as kidney reflux, or bladder reflux. There are two kinds of reflux, primary and secondary. Primary VUR affects 90% of the children that are diagnosed with reflux. In Primary VUR, children are born with a defect in the ureterovesical junction (UVJ valve). This basically means that there is a valve where the ureter enters the bladder, and that valve is not doing its job correctly. Because of this defect, there is an abnormal flow of urine from the bladder back up into the kidneys, where it can cause permanent damage.   Secondary VUR has the same abnormal flow of urine, but instead of being caused by a defect in the UVJ valve, it is caused by a secondary,  underlying condition such as nuerogenic bladder,  immunity disorder, or other medical condition.  With secondary VUR, the underlying condition must be treated to correct the reflux.

Reflux by itself is not dangerous. The danger comes when reflux is coupled with an infection in the urinary tract.  For unknown reasons, children with reflux often have a much higher incidence of urinary tract infection (UTI).  When a child with reflux develops a UTI, the infected urine moves upward into the kidneys where it can cause  the kidneys to become infected (pyelonephritis).  Infection in the kidneys can cause renal scarring, and damage to the kidneys, which can eventually lead to renal failure if not treated.

KidneyReflux can affect only one kidney or both. If only one kidney is affected, it is called unilateral reflux and when both kidneys are infected it is called bilateral reflux. In some cases, like the case of our daughter’s, there can be duplicated ureters (or extra ureters). In these cases, 1 or all of the ureters can be affected, and each ureter is given a grade. These grades are based on how severely each individual ureter is affected.

What is Kidney Reflux?
How is Reflux Graded?
Symptoms of Reflux
Testing for Reflux
Treatment for Reflux

Symptoms of Reflux

Vesicoureteral Reflux (VUR) is said to occur in 1-2% of healthy children, although some believe that this number may actually be higher. There could be a number of children with low grade reflux that never have symptoms, and may never know that they have the condition.

The most common symptom of VUR is urinary tract infection. About one third of children that present with UTI are found to have VUR. (reference)

The UTI, while uncomfortable, is not dangerous by itself. When coupled with VUR, it can become quite dangerous because the bacteria in the infected urine can then travel back up the ureter and into the kidney, which can cause the kidneys to become infected (pyelonephritis). A kidney infection can be dangerous, because the infection can cause renal scarring, and permanent damage to the kidney.   Because of the potential for damage to the kidneys, it is important to have children evaluated further after UTI, especially when accompanied by nausea and/or fever (both of which can signify that the infection has moved into the kidneys). And especially young children under the age of two.  Infants should always be evaluated for UTI if there is a high fever and no obvious explanation (no rash, virus, etc.).

Other symptoms can include:

  • Bedwetting
  • Hydronephrosis
  • Failure to thrive
  • High blood pressure
  • Nausea and vomiting
  • Proteinuria

What is Kidney Reflux?
How is Reflux Graded?
Symptoms of Reflux
Testing for Reflux
Treatment for Reflux

How is Reflux Graded?

We were beginning to understand what vesicoureteral reflux was, and why our daughter had been diagnosed, but we still didn’t understand what they meant by the grades of reflux? We were told that grade V was the most severe grade, but I still had no idea how that was determined, or what it really meant.

The grades of reflux are determined by the severity of the condition in each ureter.  According to an article on Medscape, reflux grades are determined by the following standards:

Grade I – urine backs up into ureter only, and the renal pelvis (the renal pelvis is the area at the center of the kidney, urine collects here and is funneled into the ureter.) appears healthy, with sharp calyces (calyces are the collecting area for urine within kidney before it is passed through to the renal pelvis).

Grade II – urine backs up into the ureter, renal pelvis, and calyces. The renal pelvis appears healthy, with sharp calyces.

Grade III – urine backs up into the ureter and collecting system. The ureter and pelvis appear mildly dilated, and the calyces are mildly blunted.

Grade IV – urine backs up into the ureter and collecting system. The ureter and renal pelvis appear moderately dilated, and the calyces are moderately blunted.

Grade V – urine backs up into the ureter and collecting system. The pelvis severely dilates, the ureter appears tortuous, and calyces are severely blunted.

This picture comes from the website cincinnatichildrens.org

The good news is that reflux resolves spontaneously before adolescents in most cases of Primary VUR, depending on the grade. The resolution rates for grade III and under is found to be up to 80%. As the grade of reflux increases, the odds of resolution decrease. Grade 4 only has a resolution rate of about 10%, and grade 5 has very little chance of resolving spontaneously. For us that meant that Lizzie’s reflux would probably not resolve over time, and would eventually require surgery. They explained to us that they would still give her body a chance to heal itself and that we would wait until age 4 or 5 before considering surgery unless there were other complications.

What is Kidney Reflux?
How is Reflux Graded?
Symptoms of Reflux
Testing for Reflux
Treatment for Reflux

Treatment of Reflux

So now that we understand it, how in the world do you treat Vesicoureteral Reflux? For the purpose of this article we’re going to talk about the most commonly accepted treatment methods. You should know that they are widely debated. I have linked to some articles discussing that debate throughout this article if you are interested in reading more.

Treatment for VUR  is usually based on the grade of the reflux.  After diagnosis, the child is almost always started on a prophylactic antibiotic (abx), which is a daily low dose of antibiotic used to prevent UTI. The hope is that the abx will kill any bacteria before they can cause an infection. If there is no bacteria present, it reasons that there will be no UTI, and therefore no infection in the kidneys.  No kidney infection means no scarring or damage to the kidney. In recent years there has been a lot of debate as to whether this approach is effective or safe.  Most physicians believe that it is safe and until further studies can be completed (like the ongoing RIVUR study) it is generally recommended that low dose abx be used.  For more information about prophylatic antibiotic use, its safety and which types of abx are used click  here.

For reflux with the grades 1-3, the child is usually given daily abx, and then routinely monitored for any changes. Since about 80% of children in this group have spontaneous resolution, there may be no need for any other treatment, however monitoring should continue until the VUR has resolved. If the child has breakthrough infections, Endoscopic treatmet (Deflux) may be a good option for correcting the reflux in lower grades.

In grades 4-5, (sometimes 3 is also included in this group), abx are also started, and the child is routinely monitored. In the higher grades, spontaneous resolution is much less likely. For these children, Deflux injection, or reimplantation surgery may be required if the VUR does not resolve on it’s own, or if there are problems with breakthrough UTIs. If there are breakthrough infections, surgery may be considered, although most doctors try to delay surgery until the age of 18 months (except in cases of recurrent infection, or kidney damage).

There is a lot of debate on the treatment of VUR, but the overall goal is always to keep the kidneys healthy. From my experience and research, the first step is generally to start a child on abx at all grades (again, the effectiveness of antibiotics is widely debated). For all grades, if the child is under the age of 5, there is usually a waiting period given to monitor the child and allow time for growth.  The hope is that there may be some type of resolution (don’t forget, there is still a 10% chance that even grade 4 will resolve). A VCUG is performed yearly to monitor the child’s condition. When there are breakthrough infections, an aggressive approach may be needed to correct the reflux. Deflux is generally used for the lower grades, and the higher grades often require ureteral reimplantation.

Deflux has generally around 80% or higher success rate, and can be repeated to improve success rates. Reimplantation has a 95% or better success rate, but is much more invasive. You should discuss your options in detail with your urologist, and do your own research. For more detailed information on Deflux click  here. For more information on  ureteral reimplantation, click here.

For the very small percentage of failed reimplantation surgeries (of which our daughter Lizzie is a part), the child should undergo urodynamics study to rule out abnormalities in the bladder which may be causing the VUR. An MRI might also be a good option to rule out any neurologic problems which might be causing the VUR. Lizzie has done both of these tests in the past , and both have given us a great deal of information.

For a more in depth look at each of these treatment options, please check out the following articles:

Prophylactic Antibiotics for the Treatment of Vesicoureteral Reflux
Prophylactic Antibiotics – What’s the Big Debate?
Ureteral Reimplantation to correct Vesicoureteral Reflux
Endoscopic Treatment (Deflux) for the treatment of Vesicoureteral Reflux

What is Kidney Reflux?
How is Reflux Graded?
Symptoms of Reflux
Testing for Reflux
Treatment for Reflux

Prophylactic Antibiotics for the Treatment of Vesicoureteral Reflux

The American Urology Association guidelines (1997) recommend that children with Vesicoureteral Reflux grades I-IV should be treated with daily antibiotic therapy (also known as prophylactic antibiotics). Prophylactic antibiotics have been used as a first step in treating Vesicoureteral Reflux since the 1960s. The idea is based on the premise that a small daily dose of antibiotics will kill any bacteria in the urine which will keep the bladder sterile, and would therefore be beneficial in preventing UTI and renal scarring. If UTI can be prevented, the kidneys will be protected, and the child can have time for the reflux to resolve without further treatment (most common in the lower grades of reflux).

Since that time, the use of antibiotics has been widely debated, however most doctors still use antibiotics as their first step in treating reflux.

There are only a few types of antibiotics that can be used for prophylaxis in children with VUR. The most common types used are trimethoprim sulfamethoxazole (Bactrim), nitrofurantoin (Furadantin) and penicillin derivatives of amoxicillin. These antibiotics are used because their active form is excreted in urine which in theory should keep the urine sterile. Trimethoprim sulfamethoxazole (Bactrim) is the most commonly used prophylaxis for the treatment of VUR. The only antibiotic safe for use in children 3 months or younger is the penicillin derivatives of amoxicillin.  For more information on the types of abx used for treatment click here.

There are risks and problems associated with prolonged daily use of antibiotics in treating VUR. These include compliance, side effects, resistant bacteria and effectiveness of the antibiotic. It is generally accepted that children with lower grades of reflux and no other complications (such as hydronephrosis, significant renal scarring, etc) can safely be taken off of antibiotics at the age of 5. Studies have shown that by the age of 5, the chances of renal scarring are significantly reduced.

There has been a lot of debate about the safety and effectiveness of antibiotics in recent years. For the purpose of this article, we have given information solely based on the AUA recommendations that antibiotics should be given as a first step in treating reflux. For more information on antibiotics and why some believe they are ineffective, and possibly dangerous, please read our article “Antibiotics – What’s the Big Debate?“.

Endoscopic Injection (Deflux) for the Treatment of Vesicoureteral Reflux

Endoscopic treatment of VUR is an outpatient surgery using a bulking agent to correct Vesicoureteral Reflux. For this article we will be discussing the bulking agent Deflux, but there are others available. During surgery, the doctor uses a cystoscope to look into the bladder. A cystoscope is a thin, lighted instrument that is used to view areas of the urethra and bladder that can not easily be seen on x-ray. The cystoscope is entered through the urethra and into the bladder. During this procedure, the surgeon will use very small instruments to inject the Deflux into the lining of the bladder where the ureter enters into the bladder. By doing this, the surgeon creates a new valve that prevents the back flow of urine into the kidneys.

Deflux is a gel substance made from two types of sugar-based molecules (polysaccharides) called dextranomer and hyaluronic acid. These materials work well because they do not cause significant reactions to the body. Hyaluronic acid is actually produced naturally within the body.   Because of this, the injected agent breaks down over time, leaving a permanent bulge of tissue which serves as the new valve. The urine can still pass from the ureter into the bladder, but because of the new valve, the urine cannot freely flow back into the ureters. It’s kind of like a door that only swings one way.

Deflux injection has shown the best results in children with grades I, II, III and in some cases of grade IV. The higher the grade of reflux, the less effective the injection will be. Most studies show the overall success rate of Deflux injection to be 80% or better after the first injection. Some children may require a second or third injection. With multiple injections, the success rate moves into the 90th percentile.

Children may not be good candidates for Deflux if they have kidney failure, voiding dysfunction or other bladder or kidney abnormalities. Children with grade V may not be considered as good candidates and may be encouraged to have a ureteral reimplant. In some cases, like our daughter, Deflux can be done after a reimplantation has failed. Studies show high success rates when using Deflux after an unsuccessful reimplant, depending on the reason for the previous surgeries failure. If the reflux is secondary to an underlying condition, surgery may not be effective until the underlying condition is corrected.

Deflux injection can be a good alternative to long term antibiotics and may be a good option for children with breakthrough infection. There are many advantages to having Deflux instead of open surgery. For one, it is much less invasive than reimplantation surgery. Endoscopic treatment with Deflux, does not require an incision, therefore recovery time and risk of complication are lessened. Deflux is done as an outpatient surgery, so your child can go home the same day, where reimplantation patients may have a 1-3 day hospital stay.  Another plus is that having Deflux does not prevent the child from having surgery later if needed.

As with any procedure, there are also risks involved with Deflux. Deflux is less successful than the reimplantation (especially in the higher grades), and Deflux injections do not have a lot of long term studies available because it is a relatively new procedure. This procedure was approved by the FDA for use in the United States in 2001.  So as of right now, there have only been 10 years worth of procedures to examine.

If you and your doctor decide that Defux is a good option for your child here is what you can expect from surgery. During the surgery, your child will undergo general anesthesia, so he/she will be completely asleep for the procedure. The doctor will perform the surgery as described earlier, and the time will depend on if the procedure is unilateral (one ureter) or bilateral (both ureters) but should generally take 15-30 minutes. When the surgery is complete, the child will go to recovery where you can be with them.  As the child wakes up, they will monitor them for a short time, but your child should be able to go home that same day.

After going home, your child may have some bleeding in the urine which is normal for this procedure. General anesthesia and Deflux injection are generally low risk, but complications can occur. Complications can include blockage of the ureter (from too much injection), or infection from surgery. There can also be problems from the anesthesia.

If your child has any of the following symptoms after surgery, you should contact your doctor immediately:

Temperature over 101.4 degrees F
Excessive Vomiting
Severe pain

Ureteral Reimplantation to Correct Vesicoureteral Reflux

It was hard for me to grasp what the doctor was saying  when he first told us that our little Lizzie needed a ureteral reimplantation surgery at the age of only 5 months. We had known from the beginning that she would need surgery, but we were expecting it to be somewhere between the age of 3-5 years, not just  5 months old.  It was a really difficult time in our lives.

How do you decide when it is time for surgery? And what do you expect when the time comes? For us, the decision was pretty easy since there really were no other options. Lizzie had grade 5 reflux in a duplicated system, and had 4 kidney infections (one of which was a resistant bacteria requiring a pic line) all while on antibiotics.  All of this before she could roll over.  She wasn’t even 5 months old when we made the decision to have surgery. We needed to do something, and do it quickly. Most doctors will try and wait until a child is 18 months old if possible, just to give the child some time to grow. There have been studies showing that the surgery has a higher success rate after the age of 12 months, however if there are multiple recurrent infections or damage to the kidneys, aggressive treatment may be needed. The general guidelines for surgery are the following:

* high grade reflux (grades IV & V)
* recurrent infection despite antibiotics
* the child is unable to take antibiotics (for whatever reason)
* the reflux has continued over a period of years and is not improving.

Once you’ve made that decision that surgery is the best option,  the next step is understanding how the surgery corrects the reflux. Children with Primary Vesicoureteral Reflux are born with a defect in the ureter(s) that allows the backflow of urine into the kidneys. Ureteral Reimplantation Surgery is a surgery performed to change the way that the ureter(s) enter the bladder. The surgeon will make an incision in the lower abdomen, and then into the bladder where they will basically sew the ureter(s) into the proper place. This corrects the valve that was allowing urine to reflux.

Once your surgery is scheduled, what should you expect, and what do you need to know?  First you should know that the surgery is very successful with a 95-98% success rate, which means odds are very good that the surgery will correct the VUR.  The surgery is done under general anesthesia, which means the child is completely unconscious for the entire surgery. Many children will also have an epidural so that there is no pain for a few hours after they awaken. The surgery generally takes between 2-3 hours, but may take longer if there are duplicated ureters, or if tapering of the ureter is needed. A ureter may need to be tapered (made smaller where it enters the bladder) if it is a megaureter. This may help prevent further reflux by decreasing the size of the opening.

When ureters are tapered, the child may require stents to keep the kidneys drained. When Lizzie had her surgery, we expected a 2-3 hour surgery with possible tapering, and were surprised when it became 5 hours. Luckily, most hospitals are well equipped keep you updated, and we were informed mid-surgery that things would take a little longer. Apparently, while they were performing the surgery, they discovered that instead of 3 ureters, Lizzie actually had 4, which meant there was another ureter that needed to be reimplanted. Just know that there are a number of reasons for things to be delayed, so expect the unexpected.

It’s hard to be prepared for what will happen after surgery. Most children do really well with anesthesia, however some children may wake up very upset. Unfortunately you can’t know which direction your child will go until after it has happened. Your child will have a catheter that may need to stay in place for 1-3 days. In our case, it was removed after 24 hours. Some children may require stents if any type of reconstruction has taken place, and some children may require catheterization for a longer period. Both of these are normal occurances after surgery.

You should discuss your child’s pain management with your doctor and nursing staff before the surgery. You should know what drugs they will be taking, how much will be given and how often your child will/can receive it. On a more personal note here, we had wonderful nurses that made sure Lizzie was comfortable and getting the medicine that she needed, but I have spoken to other parents that have had a very difficult time. You may also want to discuss any other medications your child might need, such as medication for bladder spasms. It is common for children to experience bladder spasms after surgery. Spasms seem to be worse in older children. Lizzie had mild, but frequent bladder spasms and was given Ditropan to help control them. She also struggled with dehydration. Keeping your child hydrated is very important after the surgery. It not only helps recovery, but also helps keep the bladder flushed and for us, helped minimize the bladder spasms. There may also be blood in the urine for a few days up to many weeks. As long as it is not getting worse, it is normal in most children.

When your child gets out of surgery, you can expect them to be very tired and a little out of it for a while. He/she will have a small incision in the lower abdomen (see picture) which is closed with steri-strips that will either dissolve or fall off over time (in Lizzie’s case, we eventually peeled them off). You can no longer see Lizzie’s scar unless you know exactly where to look, so her scarring has been minimal.   Your child will usually remain on a course of antibiotics for 7-10 days, at which time they will remain on a prophylactic antibiotic until it is verified that the reflux has resolved.

Children can still get a UTI after surgery, however because of the surgery it should remain in the bladder, and not move into the kidneys. UTI is much less common after surgery, however some children are simply more prone to UTI than others. Children are usually released from the hospital 1-3 days after surgery. They will most often be prescribed a pain medication as well as a medicine for bladder spasms (such as Ditropan). If you feel like your child is having difficulty after the surgery, do not hesitate to call your doctor immediately. If the following symptoms occur, you should call your doctor right away:

* If the child’s temperature goes above 101.4 degrees F
* Excessive bleeding from the abdomen where the incision was made
* Dehydration or inability to tolerated liquids
* Vomiting excessively
* If the child is unable to urinate

About 4-6 weeks after surgery, the child should have an ultrasound to verify that there is no obstruction. After 4-6 months, your doctor may choose to have another VCUG to verify that the reflux has resolved. Children should have an ultrasound yearly to check the kidneys,  and blood pressure should also be checked yearly to monitor for hypertension. Some studies have shown reimplantation to be up to 98% successful, but as with any surgery, there can be complications. General anesthesia is generally low risk in most children but can cause complications. In rare cases, obstruction and persistant reflux can occur after surgery. When obstruction occurs, it may be temporary, but the child may need to have the fluid drained from the kidney (this is often done with a nephrostomy). In some rare cases, a child may need surgery to remove the blockage, or to repeat the reimplantation. Deflux has also been found to be effective in some cases of persistent reflux. If you suspect that your child’s reimplantation has not been effective, you can read more about our personal journey with a failed reimplant and what steps we have taken here.

Antibiotics – What’s the Big Debate?

In recent years, there has been an ongoing debate about the use of prophylactic antibiotics for the treatment of VUR. Is it effective? Is it safe? What are there side effects? Are the dangers worth the risk? There is a lot of information out there.  Some of it good, some of it not so much so.  My first recommendation?  Do your research, so that you can make an informed decision. Know which antibiotic will be given, the dosage and the side effects. Some kids do great with antibiotics, and experience very few side effects. Other children don’t do well at all. As a parent, our job is to make the best decision we can for our children, and that decision will be different for everyone.

I’ll start this article off by saying that I am (personally) not a big fan of daily antibiotics. That being said,  I also realize that they are still the best option for many children with VUR. No one should ever discontinue antibiotics without first discussing it with their doctor, and you should speak openly with your doctor about any concerns you may have about daily antibiotics.  So here we go…

What ‘s the big debate?

The biggest question of course is whether or not daily antibiotics are effective in preventing urinary tract infection and renal scarring. Unfortunately there is still no clear cut answer. There have not been enough long term comprehensive studies to provide definitive answers to this question, but many new studies are ongoing, such as the RIVUR project.  For years doctors have been prescribing low dose antibiotics to children with VUR with the belief that antibiotics help in the prevention of UTI. The idea is that the antibiotics will keep the urine sterile which will prevent/reduce the number of breakthrough UTI’s.

Many recent studies are beginning to show that antibiotics may not be as effective in preventing UTI or renal scarring as once believed. For example, this study concludes that “Furthermore, their data do not support a role for antibiotic prophylaxis to prevent recurrence of infection or the development of renal scars (in fact, in this study, prophylaxis increased the chance of developing APN (kidney infecrtion)!).” The most interesting part of the study is that in the 8 patients with VUR that had recurrent kidney infections (APN), 7 of them were on prophylactic antibiotics. Only one child from the group not being treated had recurrent kidney infection. Even more interesting to me, is that all 7 of the children on antibiotics developed bacteria that was resistant to the antibiotic that they were given as a prophylactic. That brings up major concerns about resistance issues in prophylactic antibiotics.  While this study produced interesting results, it was a small study in which only 236 patients were enrolled, and larger studies with more specific guidelines are needed.  That being said, the conclusions can’t be just be swept aside either.

Another recent study here shows that the use of probiotics may be just as effective as using prophylactic antibiotics.  While this sounds extremely promising, one must also keep in mind that the effectiveness of antibiotics is being called into question.  There are also studies that suggest early intervention with Deflux injection may be more effective and safer than long term antibiotics. There are more comprehensive studies being conducted currently to verify the findings of this research.

Another question that surfaces when talking about antibiotics is whether or not antibiotics are safe for long term use. While most doctors will tell you that antibiotic use at this low dose is harmless, there are some risks associated with the prolonged use of antibiotics. One of the biggest concerns of long term use is the risk of resistant bacteria. Bacteria can become resistant to antibiotics, causing infections that are harder to kill off, and harder to treat. Many times these bacterial infections will require stronger IV antibiotics, and can lead to more dangerous infections that have fewer treatment options. There is also the fear of a superbug that may have very limited treatment options. Other problems include an increase in problems later in life such as allergies and asthma.

You should also be aware of the drugs side effects. The side effects of different antibiotics will vary in different children. Some of the more general side effects may include, gut issues such as diarrhea or nausea and chronic yeast infection. The problem with antibiotics is that they not only kill the harmful bacteria in the body, but also kill the beneficial bacteria found in the gut. This imbalance can cause uncomfortable gut issues, as well as yeast overgrowth.

So, are the benefits of antibiotics worth the risks? This is such a personal decision, and it’s a hard question to answer. I know some parents who think that antibiotics are wonderful and feel that they have really helped their children remain healthy. Many kids have no adverse side effects, and no recurrent infections while on antibiotics. While most children do fine on antibiotics, that is not always the case and for some children they may not be a good solution.  You should always talk to your doctor if you have concerns about the use of antibiotics.