Parents, know what to expect when your child is diagnosed with bilateral reflux. Get the facts on symptoms, testing, antibiotic treatments, side-effects, and surgeries.
Bilateral refluxing ureters, or vesicouretic reflux, is a congenital defect in the size of the tubes that connect the kidneys to the bladder. When reflux occurs in babies and young children, it can be especially difficult to deal with. Occasionally, the defect can be caught in utero via ultrasound, but if the defect is overlooked the child can be in pain for months before diagnosis and treatment.
The ureter tubes normally act as a barrier, keeping urinary tract infections (UTI) and bladder infections from backwashing into the kidneys. The tiny size of the tubes creates a certain pressure that keeps urine in the bladder, but ureters that are oversized or distended allow urine to free-flow back and forth between the bladder and kidneys. Urine literally jack-hammers up into the kidneys when the bladder compresses during urination.
When a child has reflux in one ureter or two - thus bilateral - chronic urinary tract infections (UTIs) become kidney infections very fast. This results in kidney disease, scarring or failure if undetected. Vesicouretic reflux can also cause high blood pressure. Because children can rejuvenate better than adults, the damage from this disease will sometimes heal if the area is kept infection-free. However, if the damage is too severe, surgery will be necessary.
Symptoms of Vesicouretic Reflux...
Infants will not be able to tell you that it hurts them to urinate. Since many babies cry when their diapers are wet, painful urination is hard to gage. Older children will tell you if it hurts when they go potty. The rank smell of infected urine combined with an elevated temperature is more indicative, Weights issues and a baby that is failing to thrive are also symptoms of reflux because the body regulates sodium levels around the ureters and uses those levels to signal thirst and hunger. Refluxing ureters will have signal a sodium imbalance as urine free-flows, and this messes with appetite and energy levels.
Testing for UTI and Bladder Infection ...
If your child runs a fever of more than 102 degrees-farenheit, and she seems to have no other symptoms besides foul-smelling urine or irritability, contact your doctor immediately. You will save time in the waiting room if you keep specimen cups at home or with you while traveling. Learn together how to catch urine in a cup. Make it a fun game, and don't get squeamish if your hands get wet in the process. Fresh urine is sterile, and your child should not be made to feel dirty or guilty about any part of this disease.
Diagnosing Vesicouretic (Bilateral) Reflux ...
Blood tests will reveal psuedohypoaldosteronism, which is the long and confusing word for the sodium imbalance that occurs in those who suffer from reflux. This sodium imbalance combined with urine specimens that indicate infections are the best clues. An ultrasound of the kidneys, bladder, and ureters will then be performed. Ultrasounds are non-invasive, but they can still be scary to a little one who doen't understand the cold jelly and the stranger who wants to "touch them with a stick." As your child gets older, this will become the easiest test.
Ongoing Treatments for Reflux ...
Once your child is diagnosed, a treatment plan will be outlined. In more severe cases, your baby will need to be on antibiotics until potty-trained. Bi-yearly ultrasounds and a yearly catheterization test called a VCUG or renal scan will be recommended for keeping track of the condition of the ureters and kidneys. Small children are kept awake but sedated for the VCUG, so that they won't be traumatized by the insertion a tube into their private parts. Complete anesthesia is required for renal scans, since accuracy depends on the patient holding still.
Parents or guardians are allowed to be present during all tests, although the anesthesiologist may try to discourage you from being around when your child is put under full anesthesia. This is because some parents are emotionally disturbed by their child's limpness and unconsciousness. However, your child will want to see your face as they fade out and then come back, so they feel safe. Seeing your child suffer is difficult, but holding his hand reassures both of you while deepening your bond.
If antibiotics are mandatory, ask your pediatric urologist for a narrow-spectrum antibiotic that will target the specific area and keep your child's gut relatively healthy. If you start narrow, you can always go more broad. Broad-spectrum antibiotics will affect their gastro-intestinal system, making digestive issues a big side effect. Prolonged ingestion of any antibiotic should be accompanied with extra breastfeeding if your child is still interested, or you should administer probiotics daily in the form of chewable tablets or natural, sugar-free yogurt.
Two different surgeries are offered to correct bilateral or unilateral reflux. The child's age and size of ureters at the time of diagnosis dictates what surgery will be done and when it will take place. If kidney damage is severe, a more complicated surgery with a lower success rate will be attempted in an effort to buy time. If the kidneys are still functioning or even regenerating, antibiotics are used to keep further infection at bay, allowing the child to grow old enough to handle the less-complicated and more successful surgery.
PERSONAL NOTE: This author's child was diagnosed with bilateral reflux at six months of age. She was "failing to thrive," unable to make it past a weight of 12 pounds. Her lack of appetite confounded gastroenterologists, but then a blood test revealed a sodium imbalance. A suspicious doctor then prescribed an ultrasound, which revealed ureters swollen to levels of 4 and 5 on a scale of 1 to 5. Subsequent tests, including a VCUG and renal scan, revealed sad images of a half-dead right kidney.
Our underweight daughter was placed on antibiotics immediately, and she began to thrive. Her sodium imbalance, which had been the blessed red flag to alert us to her condition, was easily corrected by adding small pinches of salt to her juice or milk. Tests every six months for the next several years revealed some regeneration and stability, but then things went downhill again when her body began resisting the meds.
At one point, she had two horrible kidney infections back to back, and was at risk for immediate surgery. Thankfully, she responded to antibiotic shots administered in emergency rooms. We kept changing her antibiotic, trying to make it past potty-training. She was three years-old when her pediatric urologist finally gave us the green light to take her off antibiotics. At that point, we were paying $92/month, even with our insurance kicking in quite a bit.
Praise: she has been potty-trained and infection free for a couple years now. We await further testing and a prognosis for impending surgical treatment. This author welcomes questions and discussions on this subject.
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