The Pee Saga: Our Life with Vesicoureteral Reflux 2016-11-16T08:38:25+00:00

The Pee Saga: Our Life with Vesicoureteral Reflux

by Karla Cunningham

Vesicoureteral Reflux (VUR) is an often-inherited condition affecting about one percent of children, causing the abnormal flow of urine from the bladder to the upper urinary tract, including the kidneys. There are five grades of VUR, I through V, with Grade I being the least severe and Grade V being the most severe. There are also primary and secondary types of VUR, and the condition can affect one or both sides of the urinary tract.

vurThat’s the nice, textbook definition of the condition. The reality of VUR is something else altogether. Since my daughter was born, I’ve learned more about this condition than I ever wanted to, and I am happy to pass along some of my hard-won lessons.

Lesson One: An Ultrasound Doesn’t Rule Out VUR

I had VUR as a child, and had surgery when I was seven. I still remember the testing, the surgery, and its aftermath. The mere thought of a catheter is enough to refuse medical care. Indeed, I made my OB promise before my C-section that no catheter would be inserted before my spinal epidural. It turns out my reaction isn’t unique.

Thus, I was familiar with VUR before I was pregnant, and knew that my child would have a higher risk of inheriting the disease. In utero, my Wee One (we didn’t know we were having a girl until the Big Day) was diagnosed with hydronephrosis, which involves dilation inside the kidney. In prenatal cases, it is frequently linked to VUR, which needs to be ruled out after birth with further testing, which is highly controversial in the newborn stage.

In our case, my daughter was given an ultrasound a few days after birth and declared “VUR free.” She was sent home without prophylactic antibiotics. Unfortunately, she received the complete opposite of the usually recommended treatment, which is to be sent home on antibiotics, and–with or without an ultrasound–to proceed to a test called a voiding cystourethrography (VCUG).

While my daughter should have had a VCUG shortly after she was born, she did not. It wasn’t until her first kidney infection that the VCUG entered our lives.

Lesson Two: The Dreaded VCUG Really is Bad

I will not lie to you. The VCUG is horrendous for you and your child. It is painful to watch, and equally painful to experience. I still remember mine. There is no anesthetic used during catheter placement (at least in the United States), and your child’s gonads will be exposed each time to direct radiation. It’s possible your child may be given a sedative, but in my experience this option was always summarily refused.

Depending on the skill of the radiologist, the procedure may be done relatively quickly–or not. While I had to mentally prepare each time for the VCUG, it remains the gold standard for diagnosing and staging VUR. Be sure an experienced pediatric radiologist performs it. This isn’t the time for a novice resident to take multiple pictures while your kid suffers.

Lesson Three: There are Other Important and Alternative Tests

In addition to the VCUG, the other main test is the radionuclide cystogram (RNC). It uses radioactive tracers and signals if VUR exists, although it is not useful for staging. It still requires a catheter, so you don’t avoid that trauma, but it exposes your child to less radiation. I liked to offset the VCUG with the RNC to minimize radiation exposure for my daughter. It is worth talking to your urologist about this option, as many doctors simply require an annual VCUG and a visit to discuss the results.

In most urology visits, your child’s blood pressure will be checked and a sterile urine sample will be tested. Sometimes they’ll use a catch bag; most of the time they’ll use a catheter, especially in younger children. Some urologists may even perform a suprapubic tap, which is a method to obtain a very sterile sample, but is highly invasive and painful.

Blood tests may be ordered to evaluate kidney function, and ultrasounds will monitor your child’s kidney development. Ultrasounds are often performed as a part of the urology exam. Your child may have to have other tests as well, particularly to make sure the kidneys are growing and functioning properly. The DMSA renal scan will show any scarring, the most significant risk of recurrent kidney infections. Some children have urodynamic testing to see how their bladder is functioning. Bladder and bowel dysfunction is common in kids with VUR and needs to be addressed. If it isn’t, it can increase the risk of UTIs down the line, even after surgery.

Lesson Four: Your Child can have a Raging Kidney Infection and still have a Negative Urine Dip

At eleven months old to the day, my daughter spiked a fever and had a febrile seizure. Her fever would not come down and we were rushed to the hospital. There, she was given an IV, had some blood work drawn, and was given her first catheterization to test for a urinary tract infection (UTI). She was sent home because everything was negative. It must be a virus, I was told.

For us, we began the process that defined, from that day forward, a kidney infection: fever that was uncontrolled, even when staggering ibuprofen and acetaminophen, and profound illness and lethargy. A typical upfront negative “pee test” and then the phone call, days later, that my daughter had a kidney infection after all, because the culture was positive.

That first time, antibiotics were ordered and our pediatrician referred us to a urologist who ordered the VCUG. An estimated 70 percent of all UTIs in infants are caused by VUR, but VUR isn’t always symptomatic. In my daughter’s case, the VCUG confirmed bilateral stage IV VUR. She was placed on prophylactic antibiotics to try to prevent future infections.

Lesson Five: Monty Python must have Designed the Flow Chart for Managing VUR

What’s fascinating about VUR is that it is fraught with controversy at every level–how to diagnose it and how to treat it. This makes being a parent of a child with VUR very difficult.

With a VUR diagnosis, your child’s doctor will likely recommend beginning prophylactic antibiotics. These are small doses of antibiotics that cover the typical bugs that lead to UTIs. They are given daily (as often as twice a day), and your child may have to take them for years.

Since most children outgrow VUR, the objective is to have it resolve on its own. While the upside is potentially avoiding major surgery, there are significant downsides. These include increasing the risk of antibiotic-resistant bacteria, gastrointestinal (GI) distress, anorexia, and the expense of the drugs, depending upon your insurance.

My daughter not only experienced profound and extended diarrhea, she also had minimal appetite, leading to growth failure. We found that moving her antibiotics to right before bedtime worked better for her, in combination with the use of probiotics. However, it was a struggle to manage the antibiotic use over the years.

Prophylactic antibiotics are meant to prevent another infection, known as a breakthrough infection. If they fail and an infection occurs, this conservative form of treatment is considered a failure and surgery is usually recommended. This is especially true in cases of Grade IV and V VUR, where resolution is the least likely. About 25 percent of kids with VUR will need surgery.

Lesson Six: Another Use for the Post-Maternity Peri-Bottle

karla1Like VUR management, VUR surgery is also controversial. Two main approaches exist. The first is some form of open surgery, and the other uses endoscopic surgery to apply a bulking agent like Deflux around the affected ureter to try and improve the valve’s function. Open surgery is usually more extensive and may involve laparoscopic or endoscopic components. It will be highly dependent upon the type of defect that is causing the VUR.

Open surgery has traditionally been considered the “gold standard” to resolve VUR, and it is often recommended in more complex Grade IV and V VUR cases. The injectable bulking agent has a 75 percent success rate versus a 98 percent success rate for open surgery.

My daughter had open surgery after a final breakthrough infection that led us to the ED (once again) and days of a raging and untreated kidney infection. We opted for the open surgery because of its higher success rate and my daughter’s diagnosis of bilateral Stage IV VUR. This was a smart choice for us, as her situation was more complicated than the surgeon thought once he got in there.

While stressful, the surgery went well. Post-surgical care, however, was another story. After surgery, children will pass clots in their urine for days. Urination is agonizing, and they won’t want to do it once the catheter comes out the day after surgery.

I recommend a very good night’s sleep (while your child is still receiving some great pain killers) and a peri-bottle (like the ones used after childbirth). Fill the peri-bottle with warm tap water and squirt it gently on your child’s urethra while s/he is trying to pee. It disrupts the pain sensing process. You will be refilling this constantly for the first day or two, as your child will feel a pretty strong and constant urge to urinate. This will pass eventually, although there may still be blood in the urine for a few days.

The minute your child can do so, begin pushing the “move it” diet as well, a combination of prune juice, applesauce, and wheat germ. If this isn’t possible, ask for laxatives RIGHT AWAY, even though your nurse/doctor isn’t going to think it’s important. Straining to produce a bowel movement is painful and not recommended after this surgery.

We had several complications post surgery due to my daughter’s other medical issues. None of these were urological though. Following her recovery, she has been antibiotic and UTI free for over five years. Given her history, however, we still monitor her kidney growth, and whenever she runs a high fever her urine is tested, just in case. Otherwise, aside from a small scar that looks like a miniature C-section scar, you would never know she had surgery.

Lesson Seven: Get Ahead of the Condition and Always have an Action Plan

Today, there are many online educational resources for parents of children with VUR. There is also a very good group forum on Yahoo Groups for those facing surgery, with a parallel group on Facebook. However, these groups are the exception, not the rule. I am surprised that there aren’t more parent support networks out there, either through the Kidney Foundation or various hospitals. Unfortunately, from reading various parent blog entries, it seems that confusion about VUR remains.

Hopefully, readers now have a better awareness of VUR and its complexity. If you think your child is at risk for VUR because of prenatal testing or a family history, familiarize yourself with the standards of care and demand them before you leave the hospital with your infant. Understand that a UTI in the first year of life is highly suggestive of VUR; however, in many instances, VUR is asymptomatic.

If your child has been diagnosed with VUR, establish an action plan with your pediatrician and urologist. For example, if your child is presenting with a high fever and no other symptoms, will antibiotics begin right after a urine sample has been drawn for culture?

Finally, create a care plan that has both short and long term visions. For the short term, most urologists begin with a plan of watchful waiting with prophylaxis. Understand the downsides of prophylaxis and request a nutrition referral through either your pediatrician or Early Intervention. Nutritionists can help offset some of the GI and growth issues that accompany VUR prophylaxis treatment. Discuss the use of a probiotic to help ease GI issues associated with long-term antibiotic use.

For the long term, have a clear understanding of what your child’s diagnosis is, how likely it is to resolve, what the catalyst will be for surgery, and what surgical option(s) might be best for your child. Have this discussion early and often. It may change over time, but it’s important to create the line of communication to establish a good working relationship with your child’s physicians, and to give you ample time to educate yourself on the various options available for your child’s treatment.

Unlike some conditions, VUR by its very nature requires invasive procedures that your child may remember. Your hospital’s Child Life services may be a positive resource for helping your child through the diagnostic testing and surgery.

With smart, proactive treatment, you can help minimize the chance of kidney scarring, and offset some of the negative aspects of a VUR diagnosis.

Author: Karla Cunningham • Date: 9/25/2014 • Image from http://www.chop.edu/img/urology/vesicoureteral-reflux.html

About the Author

Karla Cunningham is a mom making an effort to improve parental support for those facing a VUR diagnosis for their child.

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