Healthy at Last| December 16, 2020
We treated the infection again and again, but it kept returning
When my daughter Shevy was four years old, she came down with a fever. I wasn’t overly concerned, she didn’t seem to be in any pain, but my pediatrician decided to test a urine sample to rule out a urinary tract infection (UTI).
Surprisingly, the test came back positive and the doctor prescribed a round of antibiotics. I’d heard of childhood conditions that could affect the bladder so I questioned the doctor, asking if further testing was in order.
He reassured me that there was no need to worry about a one-time UTI. He went on to explain that conditions like vesicoureteral reflux (where there’s backflow of urine from the bladder to the kidneys) mainly affects infants within the first few weeks of life (presenting with a high fever) and is usually resolved by early childhood. As Shevy was already four, had never experienced a UTI, and rarely got sick, we had nothing to worry about.
Unfortunately, our relief was premature; that UTI was just the very beginning. Shevy continued to have UTIs over the next two years with alarming frequency. The cycle repeated itself over and over — the diagnosis of a UTI, a round of antibiotics, a brief period of calm, and another UTI.
When a urinary tract infection goes to the kidneys, which is what was happening in Shevy’s case, it’s excruciating, and comes with very high fevers, typically to the tune of 104°F. Watching our daughter suffer was horrible.
One Friday, I was waiting in the urgent care center with Shevy, who was yet again suffering from a UTI. It was getting close to Shabbos and an amazing friend called me and told me to go home, assuring me that she’d arrange for a private doctor to see Shevy. I let out a huge sigh of relief. We were living in Europe at the time and the medical system was difficult to navigate, so a private doctor seemed like a very good idea.
The doctor was patient and listened closely as we described the situation. He said that he’d promptly refer Shevy for further investigation of her recurring infections, something our pediatrician had refused to sign off on. He also explained that UTIs that reach the kidneys are hard to treat, and therefore, he was going to give me two prescriptions for antibiotics: one was dated for that day and the second for the following week.
He explained that some liquid antibiotics given to children lose their potency within a few days and it’s best to get a fresh bottle made for the second week of treatment. He sent his recommendations to our family doctor along with a referral for an ultrasound. Thankfully, the treatment worked and the UTIs finally subsided.
The ultrasound, however, confirmed that Shevy did indeed have vesicoureteral reflux and there was some scarring on the kidneys. I was devastated. I couldn’t believe the doctors had missed it for so long.
We were eager to come up with a comprehensive treatment plan and Shevy was referred to a consultant pediatrician. We came to the appointment with many questions and high hopes for some answers but the doctor did nothing but brush off our concerns.
He insisted that Shevy’s UTIs were caused by eating a bad diet that led to constipation and pressure on the bladder. He also suggested Shevy wasn’t going to the bathroom right away and that she was drinking too much apple juice and that’s why she was suffering from constant infections.
His monologue didn’t resonate as we knew Shevy was eating a balanced diet, practicing proper bathroom habits, and definitely wasn’t drinking too much juice. He did explain that we were seeing the tail end of the vesicoureteral reflux, which normally resolves completely by age six, which seemed like good news. Although we were happy that the end was near, we left the appointment somewhat disheartened with no real answers.
Soon after that appointment, we moved to the USA. To our great relief, Shevy didn’t have any UTIs for the next three years. In retrospect, we realized that those initial constant infections were really one long infection that her body couldn’t get rid of until the private doctor prescribed two fresh bottles of antibiotics. Unfortunately, when Shevy was nine, she suddenly came down with the familiar symptoms of a UTI and I rushed her to our pediatrician. For some reason, he wouldn’t even test for a UTI; he was dismissive and told us it was most likely a virus.
I tried to explain Shevy’s medical history and the years we spent dealing with UTIs, but he still refused to test her. Horrified and terrified, I immediately switched to a different pediatrician.
Over the next few years, Shevy continued to have UTIs. Every time I brought up the issue of vesicoureteral reflux with the pediatrician, she very firmly reiterated that it wasn’t possible in a child her age. She insisted that Shevy was simply prone to getting UTIs because of her history.
At the time, I felt helpless in the face of the doctor’s superior medical knowledge, but looking back, I shudder at the complacency and negligence we encountered during those years. The pediatrician never seemed alarmed by the frequency of Shevy’s UTIs or the fact that Shevy was suffering from kidney pain. In fact, sometimes UTIs can point toward abuse (thankfully, that was not the issue in Shevy’s case), but not once did the doctor try to investigate if something more was going on.
I can’t begin to describe how difficult it was to see Shevy suffering so much every month or two. We’d get antibiotics that would work temporarily, and then a short while later she’d be sick again, writhing in pain. The high fevers would cause her to throw up, and we were constantly living in fear of her getting sick, waiting for the next infection to hit. One of the worst parts was that she had been told the UTIs were her own fault for not eating properly. She tried so hard to maintain good eating and bathroom habits, yet the UTIs were unceasing, and she felt guilty every time she was hit with another one, as if she simply wasn’t trying hard enough.
One Sunday morning, when Shevy was 14, my husband mentioned that Rav Yechezkel Roth, the Karlesburg Rav, the Karlesburg Rav, was visiting our out-of-town community, and we had an appointment to see him that afternoon.
We’re not chassidish and I had no idea who the Karlesburg Rav was, but I went along with my husband anyway. We wrote out our names and those of our children and gave them to him, expecting the usual brachos.
During the conversation, the Rav kept looking at the names and asked “Yeder einer is gezunt? — Is everyone healthy?” Each time he asked with greater perplexity. He did this five or six times, even though we were talking about other matters completely.
I didn’t know what the Rav meant, but my heart was racing and all I could think of was Shevy. I immediately resolved to call the pediatrician and demand that she further investigate Shevy’s bladder and kidneys. Once I made the call, she finally agreed and ordered an ultrasound, which we did right away.
The results were clear: Shevy’s kidneys were much smaller than they should have been and one was even smaller than the other. At last the pediatrician agreed to refer Shevy to a nephrologist.
The nephrologist looked at the ultrasound and ordered further tests. She also referred us to a urologist and prescribed a daily low-dose antibiotic as a preventative measure. It is very unusual that vesicoureteral reflux persists in children of Shevy’s age. But despite all the science pointing the other way, the evidence was right there in front of us; Shevy was still suffering from vesicoureteral reflux.
We had a joint meeting with the nephrologist and urologist and were given two options. They could perform abdominal surgery and physically fix the faulty valve, which would result in external scars and significant recovery time. The other option was a less invasive Deflux implant procedure.
The Deflux procedure involves a tube being inserted into the bladder and, with the help of an ultrasound to guide the surgeon, a small amount of filler is injected next to the faulty valve. This changes the angle of the valve so it’s facing downward and doesn’t allow any backflow to the kidneys. After considering both options we decided to try the second option even though the surgeon didn’t seem very confident. He told us he’d never done the procedure on a child as old as Shevy and he was skeptical if it would work at all.
It didn’t take long to find out. A week after the procedure, Shevy wasn’t feeling well and was suffering from yet another UTI… only this time was different. It was just a UTI; baruch Hashem she had no kidney pain. The procedure was successful!
Over the next few years, the nephrologist continued to monitor Shevy’s kidney function and growth. Although there is some damage to her kidneys, baruch Hashem, she has full kidney function. The larger one is doing 60 percent of the work while the smaller one does 40 percent.
We were delighted that Shevy’s kidneys grew slightly and were no longer significantly smaller than they should be. Several times, the doctors told us that undiagnosed vesicoureteral reflux is a significant cause of kidney failure in people in their twenties and thirties and that we’d literally caught it at the last possible moment. Shevy did not have a typical presentation and the true diagnosis was dismissed over and over again for ten years!
Thanks to the Karlesburg Rav, I was given the strength to insist on what I knew my daughter needed.
How It Appears
Vesicoureteral (ves-ih-koe-yoo-REE-tur-ul) reflux is a condition where there is backflow of urine from the bladder back to the kidneys.
Normally, urine flows from the kidneys through the ureters down to the bladder; it’s not supposed to flow back up. If there’s any bacteria in this backflow, it causes scarring to the kidneys, which damages them. It’s fairly common in infants and treated with daily low-level antibiotics to prevent any bacteria reaching the kidneys.
Children may outgrow primary vesicoureteral reflux. Treatment, which includes medication or surgery, aims at preventing kidney damage.
Urinary tract infections commonly occur in people with vesicoureteral reflux. A urinary tract infection (UTI) doesn’t always cause noticeable signs and symptoms, though most people have some.
These signs and symptoms can include:
- A strong, persistent urge to urinate
- A burning sensation when urinating
- The need to pass small amounts of urine frequently
- Cloudy urine
- Pain in your side (flank) or abdomen
A UTI may be difficult to diagnose in children, who may have only nonspecific signs and symptoms. Signs and symptoms in infants with a UTI may also include:
- Unexplained fever
- Lack of appetite
As a child gets older, untreated vesicoureteral reflux can lead to:
- Constipation or loss of control over bowel movements
- High blood pressure
- Protein in urine
Information taken from Mayoclinic.org
(Originally featured in Family First, Issue 722)
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