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
Testing for Reflux
Putting your child through a bunch of testing is never any fun. Unfortunately, it’s necessary to diagnose and properly treat Vesicoureteral Reflux. The most common test for diagnosing VUR is a Voiding Cystourethrogram (VCUG), but there may be other tests, including renal ultrasound, DMSA scan (or Mag3), Urodynamics (or video-urodynamics), or an MRI.
A VCUG can be a pretty scary and uncomfortable test for a child, but unfortunately it is necessary in diagnosing reflux. The initial VCUG is done without sedation in most cases, although there are some doctors that offer sedation. There is also another type VCUG, the nuclear VCUG, for follow-up testing. The nuclear VCUG is very sensitive in detecting reflux, but it cannot tell you what grade it is, only whether or not the reflux is still present which is why it is not used for initial diagnosis. During a VCUG, the child is catheterized, and a solution is injected into the bladder. This solution contains a contrasting material which will show up on the x-ray. After the solution is injected, they will take a series of pictures with an x-ray so that they can see if the contrast stays in the bladder or travels into the ureters or kidneys. If the contrast is seen moving upwards, VUR is present. Lizzie has had 2 VCUGs, and it is recommended that a child have one every 6 months to a year after being diagnosed with VUR. This is a really good article on the test and what to expect.
Another test that is frequently done (often times before a VCUG) is a renal ultrasound. The ultrasound is not invasive and is a good tool for looking at the ureters, bladder and kidneys. During the ultrasound, they will look for any abnormalities in the kidneys, such as size and/or shape, and any abnormalities in the bladder, like an enlargement or obstruction. For more details on renal ultrasound, click here.
A DMSA scan is done to evaluate the kidneys, how well they are functioning (individually) and if there is any scarring or damage to them. It will also show if there are any obstructions. It can also help monitor growth and development when compared with later testing. During this test, your child will be given an IV with a dye solution. After the infusion, you will have 2-4 hours of time to let the dye travel through the body. You might want to check with your hospital to see if there are activities or play rooms available for your child to utilize during this time. When you come back your child will lie on a machine which then takes pictures of his/her kidneys. This test is sometimes done with sedation. For more information on the DMSA scan click here. I believe that the MAG3 scan is similar to the DMSA scan and used to the same purpose. For more info on a MAG3 scan click here.
A urodynamics test is a little more complex test, and is a good diagnostic test to use when there are complications or underlying problems. The test itself is done in a similar way to the VCUG, in that the child is catheterized, and a solution is injected into the bladder. During a urodynamics study they monitor the pressures in the bladder, and look to see how the bladder is working. It will show any abnormalities in the bladder, and will measure bladder capacity along with other things. In Lizzie’s case, we did the urodynamics to see if there was a voiding dysfunction that could actually be causing her reflux. For more information on the urodynamics test, please click here.
An MRI might be done when it is suspected that a neurological problem could be causing the reflux. In rare cases, bladder dysfunction and VUR can be caused when there has been damage to the nerves in the spinal cord. This can be due to Spina Bifida Occulta, Lesions on the spinal cord, or trauma to the spine. This test is used to find any defects or abnormalities in the spine. An MRI in young children is usually done under general anesthesia. For more information on MRI please click here.
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.
UTI after surgery?
It’s every parents worst nightmare. Your child has had surgery to correct VUR and now they have a UTI. What do you do?
My first bit of advice? Don’t freak out. Not just yet anyway. Surprisingly it’s not that uncommon for kids to get a UTI in the first 6 months after surgery. You have to remember that a ureteral reimplantation doesn’t actually prevent UTI. It does usually lower the incidence of UTI, but it doesn’t prevent it. What it should do is keep any infection in the bladder. A UTI by itself is not dangerous, it’s only when it moves into the kidneys that you have a problem. The reimplantation should ideally keep the infection from moving into the kidneys, but it’s not impossible during the first few months after surgery for a UTI to become a kidney infection even if the reimplantation has been successful. The body needs time to heal and adjust to the new atmosphere.
After a UTI, the first step should be an ultrasound to take a look at what’s reallygoing on. After Lizzie’s first infection post surgery, we did an ultrasound and everything looked good. All of her ureters (she had duplicates) were now in the right place. We decided not to do another VCUG just yet. For one, we didn’t want to risk introducing any new bacteria into her body, and two, she had bladder spasms for a few weeks, so it made sense that she might have gotten a UTI, and unusual bladder pressures may have contributed to the infection moving into the kidneys. For most kids this would have been the end of it. A little hiccup in the recovery, but still a completely successful reimplantation. Unfortunately for the other 1-2% there is just a little further to go.
After our second confirmed UTI post surgery, accompanied by fever, we scheduled another VCUG. Before we made it to the appointment she landed in the hospital with another resistant bacteria, and needed IV antibiotics. She ended up having another pic line placed so that we wouldn’t have to spend the next 10 days in the hospital. Talk about being back at square one! We felt like this was a pretty good indication that the reimplantation had failed. We finally got her healthy enough for the VCUG and discovered that her reflux remained the same. We could actually see all 4 ureters light up on the screen, where before we had only seen three. Lovely. Now what?
We had no idea. You hear about it, read about it and know that once in a very rare blue moon, it happens. You just never, ever imagine it could happen to YOUR child. And then it does. So what now? Now you start testing like crazy. If you haven’t done a urodynamics study, schedule one. One of the major contributors to failed ureteral reimplantation is bladder and bowel dysfunction. A urodynamics test will tell you if everything is working properly or not. It will tell you what the bladder capacity is, whether it is voiding completely, and how the muscles are working. Bladder and/or bowel dysfunction is very often the cause of failed reimplantations. If the bladder is not working properly, the pressures may be causing reflux to occur even if they are placed in the correct place. If you can correct the problem with the bladder, you can work toward resolving the reflux.
In rare cases, reflux can be caused by defects in the spine which is called a neurogenic bladder. If no other cause is found in the bladder, an MRI may be warranted to make sure that a spinal defect is not causing the recurrent reflux.
If a DMSA scan (or Mag3) has not been performed, this might be a good time to do that testing as well. This test looks to see how each individual kidney is functioning and whether or not there are any abnormalities or scarring in the kidneys. Ultrasound is a poor detector of kidney scarring and misses scarring in up to 33% of cases, which is why the DMSA scan is important. If there is no scarring, then you have a little peace of mind as well as some data to compare later if you need it. There’s no such thing as too much information.
I also recommend getting your child’s health records and starting your own little collection of labs and ultrasound results. You may be surprised at the difference between what your doctor says and what he writes down. I also recommend getting a second opinion if at all possible.
Finding the root of the failed reimplant may be difficult, but many failures are related to bladder or bowel dysfunction. There are a number of options to correct these dysfunctions depending on the type of problem . Sometimes clean intermittent catheterization (CIC) is used, sometimes bladder training, and then there are medicines available to control bladder spasms and frequency as well as a number of other options . Once the secondary issues have been resolved, the child will might need some type of additional repair such as reimplantation or Deflux injection depending on the severity of the reflux. Deflux has actually been shown in studies to be very effective in failed reimplants.
If the source of the problem cannot be found, urinary diversions have been very successful in preserving the bladder and kidney function while giving the body time to heal without repeated infection. This also gives you some time to look for answers. In the cases where a secondary condition is the cause (such as spinal defects, DES) the underlying condition must be treated before the reflux can be corrected.
Our daughter’s reimplantation failed in September 2007, and she had a urinary diversion (vesicostomy) placed in March 2008. The vesicostomy has played a huge role in keeping Lizzie’s kidneys healthy. She has had her vesicostomy for 3 years now, and will have it reversed in June of this year (2011). We are not sure what to expect, but I’ll be sure and update on how things progress and what steps we take next. If you would like to read more about her story, please click here.
For more specific information about the causes of ureteral reimplantation failures, click here.