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Chronic urinary tract infection (UTI) is not confined to adults. The confronting reality, which is perhaps starting to emerge, is that children can, and do, develop chronic UTI. This often leads to immense distress and suffering for the child and considerable stress and anxiety for the family.
Chronic UTI in children is far less studied and understood than in adults, and access to effective, curative treatment appears to be difficult, at best.
UTI is one of the most common bacterial infections in children. In the first year of life, UTIs are slightly more common in boys than in girls[1] — more so in uncircumcised boys under the age of three months.[2]
Repeat urinary infections are often considered a clue to possible structural or functional problems in other parts of the urinary tract, such as the kidneys and ureters.
After about the age of one, UTIs become more common in girls. This trend continues until about the age of sexual activity when UTIs disproportionally occur in women.
Following historically established clinical definitions, UTIs in children are sometimes divided into three categories — febrile upper UTI (acute pyelonephritis or kidney infection), lower UTI (cystitis or bladder infection) and asymptomatic bacteriuria.[3]
These categories are considered by medical practitioners to be helpful in determining the origin or the cause of repeat infections.
Common structural or functional abnormalities leading to UTI in children can include deformity or blockages in the urinary tract, abnormal function of the urinary tract, and vesicoureteral reflux (a leaking ureter value allowing urine to flow back and forth from the kidneys to the bladder). [4] [5]
Vesicoureteral reflux is found in up to 40 percent of children investigated for a first UTI.[6]
Renal parenchymal defects (conditions affecting the function of the kidneys) occur in 5–15 percent of children within 1 to 2 years of their first UTI.
There is sparse, if any, data on chronic UTI in children although recurrent UTI is a well-established entity. The distinction between the two is beginning to emerge in paediatric medical literature. However, at this point in time, there are few available data on chronic UTI in children or what leads to its development.
Keep up-to-date with news and information by joining our new register for Diagnosed or Suspected Chronic UTI in Children.
Typical UTI symptoms in children are similar to those experienced by adults and can be extremely painful and debilitating. Unmanageable incontinence is very common and can have profound psychological impacts for school aged children.
Other painful and distressing UTI symptoms children can experience include:
Sudden urinary urgency and frequency – daytime and nighttime
Incontinence – daytime and nighttime (bed wetting)
Pain, burning, stinging when urinating (dysuria)
Urinary retention
Abdominal, loin or lower back pain
Localised genitourinary pain
Cloudy or frank blood in urine
Foul-smelling urine
Fever
Nonspecific UTI symptoms in infants and children can include:
Fever
Lethargy
Unexplained crying, irritability, fussiness
Vomiting and diarrhea
Loss of appetite / poor feeding / refusing to feed
The Sydney Children’s Hospitals Network website says you should seek urgent medical attention if your child shows signs of a more severe UTI or an infection that has spread, such as:
Fever that does not go down
Back pain
Feeling very tired
Various guidelines from different states and jurisdictions are available for acute and recurrent UTI.
However, the flawed diagnostic recommendations mirror those in adult UTI, with the guidelines supporting the use of insensitive, inaccurate urine culture to diagnose and direct treatment.
As with adults, there are currently no nationally consistent, evidence-based guidelines for the diagnosis and management of chronic UTI in children.
Without more research looking specifically at chronic UTI in children, it can only be assumed that, as in adults, existing methods are inept at diagnosing chronic UTI in children and that treatment failures using the existing guidelines’ recommendations are not uncommon.
Researchers at the University of Birmingham in the UK are running a multi-centre, randomised trial looking at the optimal treatment course of cefalexin for febrile UTI in children. You can learn more from their website: https://www.curly.digitrial.com/
Research into UTI, especially in children, is grossly underfunded world-wide. The consequence is that advancements in diagnostic and treatment protocols are extremely slow.
This means medical practitioners are left to rely on guidelines that were developed based on scientific evidence that is now understood to be outdated, and potentially harmful in some instances.
Recently, Associate Professor Aniruddh (Ani) Deshpande, an Australian paediatric urologist, discovered that bacteria had colonised epithelial cells (the cells that line the bladder) in a 10-year-old patient who had suffered severe recurrent UTI for six years.
The child had received numerous standard antibiotic courses to treat repeat infections that presented as acute episodes. She returned both positive and negative urine culture tests during this period.
After becoming aware of the potential for infections to become embedded in the urinary tract (chronic UTI), Assoc Prof Deshpande and his research team at the Children’s Hospital at Westmead (Sydney) have since identified bacterial colonisation of bladder wall cells in a high proportion of his paediatric patients (mostly female) who have had multiple UTIs and have a clinical course suspicious of a chronic UTI.[13]
It should be noted that the tests deployed in these cases are used for research and are intricate, expensive and not readily available.
A confocal micrograph showing bacterial colonisation of a urothelial cell taken from a child. Micrograph courtesy of Associate Professor Anirudh Deshpande, Sydney, Australia
The research findings in children appear to be strikingly similar to the large body of global research demonstrating intracellular bacterial colonisation in bladders of symptomatic adults.[14-25]
It is becoming increasingly evident that awareness of chronic UTI in children, and treatment protocols for UTI in children, need to drastically change to reflect the current science and address the root cause of infection in this long-suffering patient group.
Chronic UTI in children which I currently define as self-sustaining, symptomatic intracellular UTI, is an enigma that needs to be studied, explored, exposed and deciphered.
We have made a brave start here in Sydney and much more needs to be done. We need to clarify the diagnostic tests that are appropriate and of course, treatments that are safe and effective in children. The treatments may or may not look like what we expect them to be.
Dr Ani Deshpande
Sydney, Australia
Contact Assoc Prof Ani Deshpande at dr.ani.deshpande@gmail.com
Contact Assoc Prof Ani Deshpande by email
The Spencer Lab at the Nationwide Children’s Hospital in Columbus, Ohio, USA, study UTI in children. The team, led by Jon David Spencer, is focused on the role of the innate immune system and antimicrobial peptides in regulating and preventing UTI.
The team has demonstrated that peptides in the Ribonuclease A Superfamily are important in protecting the urinary tract from invading uropathogens. By studying how peptides prevent UTI, there is potential to develop new non-antibiotic therapies for UTI.
Contact The Spencer Lab at the Nationwide Children’s Hospital by emailing: SpencerLab@NationwideChildrens.org
Spencer Lab at the Nationwide Children’s Hospital
Although there appear to be strong similarities between chronic UTI in children and adults, at this stage it is unknown if it is the same disease entity. Studying chronic UTI in children may provide a unique opportunity to advance the understanding of chronic UTI in an uncontaminated physiology that is not complicated through hormonal changes and sexual activity.
According to Dr Deshpande, common symptoms indicating suspected chronic UTI in children include:
Dr Deshpande has observed that children with chronic UTI have more than one of these problems.
Prepare for your child’s doctor’s appointment
Unfortunately, many doctors are unaware of the current evidence on UTI testing and treatment and may be unfamiliar with the existence of chronic UTI in both adults and children. This means that you need to be proactive, positive, and persistent in advocating for your child.
Top tips for preparing to speak with your child’s doctor
The Better Health Channel also shares useful tips on how to prepare for an appointment with your doctor.
The Chronic Urinary Tract Infection Campaign (CUTIC) is a patient advocacy organisation established in the United Kingdom in 2016.
Following a ban in the UK in 2016 that prevents treatment of chronic UTI in children (under 16 years of age) outside guidelines designed for acute and recurrent UTI [26], the group has been campaigning to reinstate access to appropriate antibiotic treatment for children suffering chronic UTI.
We share a selection of articles published by UK news outlets below.
CUTIC UK has an online support group dedicated to parents, grandparents and carers of children with diagnosed or suspected chronic UTI. The group currently has over 500 members.
Australia does not have a dedicated support group focused on children with chronic UTI, but you can find other parents and carers of children with chronic UTI in the Chronic and Recurrent UTI Support Group (Australia and New Zealand).
Consider joining our Suspected Chronic UTI in Children Register
Currently, there is an almost total lack of information about chronic UTI in children, and limited avenues for parents to receive new information that may help their own and others’ children.
Chronic UTI Australia has set up a register to collect basic information about children who have a diagnosis of chronic UTI, or whose parents suspect they have a chronic UTI. This will allow us to keep a record of your details and to get in touch with you if we have new information to share.
Any information you provide to the register will be treated in strict confidence and would not be shared outside our organisation without your written permission. The preamble to the register provides details of our privacy policy.
Keep up-to-date with news and information by joining our new register for Diagnosed or Suspected Chronic UTI in Children.
Extract from ‘Cystitis Unmasked’
We share an illustrative extract from James Malone-Lee’s book, Cystitis Unmasked (2021).
It is written by a young woman in the UK who recounts her personal trauma of chronic UTI in childhood and how her suffering continued until she was legally able to access appropriate treatment as an adult.
A young adult writes of her experiences as a child:
I developed a chronic UTI as a result of recurrent childhood urinary infections which were repeatedly misdiagnosed and left untreated, resulting in severe bladder and kidney symptoms which left me with a diagnosis of interstitial cystitis. I am now 22 years old and this condition has stripped me of my entire childhood.
“I started to develop symptoms of severe urinary frequency and urgency when I was 6 years old. When my parents initially took me to see my GP, a urine dipstick was carried out and showed no signs of infection. A subsequent culture showed insignificant bacterial growth, resulting in no further treatment. When my symptoms subsequently worsened over the next 3 months, further negative dipsticks and cultures were carried out and I was misdiagnosed with overactive bladder syndrome. By this time, my urinary frequency had progressed to the point where I was urinating every 10 minutes and could not be away from a toilet for any length of time. My parents and school teachers were advised to encourage me to train my bladder to hold more urine by withholding access to a toilet, which resulted in such severe pain and embarrassment that I became terrified of going to school and missed a significant amount of my primary school education.
“Coincidentally, recurrent ear infections throughout my childhood meant that I was prescribed numerous short courses of antibiotics, which somewhat helped to reduce my bladder symptoms. However, my symptoms would recur quickly after the antibiotic course was finished. Despite this clear correlation in symptoms, any suggestion of an infection was dismissed repeatedly by my GP.
“I battled through my teenage years with fluctuating bladder symptoms that often left me leaving the classroom several times during school lessons and avoiding school trips and social interaction for fear of suffering bladder symptoms. When I was 17, I suddenly developed a severe worsening of symptoms, resulting in immense burning during urination, severe urgency, severe bladder pain and a sensation that I had a boiling hot marble stuck in my urethra. I saw my GP, who diagnosed me with a UTI based on my symptoms and prescribed me with a week-long course of antibiotics. However, despite a slight improvement in my symptoms during this time, the symptoms continued to linger. When my GP subsequently sent my urine off for culture, it revealed mixed growth of doubtful significance, and I was diagnosed with “post-UTI irritation” and placed on oxybutynin. This pattern of events continued to repeat over the next 3 months, with numerous short 3-day courses of antibiotics, oxybutynin, Vesicare and amitriptyline being prescribed in an attempt to relieve my pain.
“Over the course of the next 2 years, my symptoms continued to worsen. I saw my GP hundreds of times and was referred to a total of two urogynaecologists and two urologists, all of whom either diagnosed me with overactive bladder or interstitial cystitis, and one of who claimed that my symptoms were psychological in nature and that my brain was simply “wired differently” to everyone else. I underwent two urodynamic studies, three KUB ultrasounds and two rigid cystoscopies under anaesthetic, the second of which I also underwent a ureteroscopy, retrograde study, urethral dilation, ureter dilation and bladder distension following a misdiagnosis of kidney stones after a poor-quality CT scan. Unfortunately, these investigations caused a massive deterioration in my symptoms and I was hospitalised on multiple occasions with severe uncontrollable pain and vomiting, kidney infections, urinary retention and passing frank blood clots that were so thick that I was unable to pass urine. Each time I was admitted to hospital and given IV antibiotics, my symptoms would improve dramatically, only to relapse as soon as the course had finished.
“By the time I self-referred to ***** private clinic in 2015, I was near suicidal with pain. My symptoms included severe, debilitating pain in my urethra, bladder, kidneys and vagina, urine retention that frequently left me unable to pass urine for 24 hours at a time, significant voiding issues and incredible urgency which felt as though my bladder was tying itself in knots. I frequently passed thick blood clots, and the immense urethral burning that plagued me with this condition felt as though someone had filled my urethra with petrol and set it on fire. I often awoke at night screaming with pain because the pain of leaking urine in my sleep was so terrifying that I often thought I was being attacked.
“[The clinic] diagnosed me with a chronic UTI via microscopy on a fresh, unspun urine sample and immediately placed me on an extended course of antibiotics. Although my progress has been slow as a result of so many years of inadequate treatment resulting in a deeply embedded infection, I have finally reached the stage where my symptoms are under control and I do not require the care of urologists or my GP with regards to my bladder symptoms. I am now able to live a relatively normal life with minimal bladder symptoms, and I have returned to work and university. However, as a result of the extensive strain that my untreated chronic UTI has placed on my autonomic nervous system over the past 16 years, I have been diagnosed with postural orthostatic tachycardia syndrome, inappropriate sinus tachycardia and gastrointestinal motility problems, thought to be due to gastroparesis, which are likely to be ongoing issues throughout my life.
“My greatest regret is that so many opportunities were missed to treat my symptoms when I was a child. Had I been given early access to treatment, my lifelong suffering could have been entirely preventable. I can only hope that in the future, children like myself will not be confined to the suffering and trauma that I have experienced.” (27)
This information, and other materials on our website, is made available for information purposes only and does not constitute medical or other personal or professional advice or instruction. The information has been researched and compiled by volunteers who do not have medical training/ qualifications. Chronic UTI Australia (Inc) shares information available in the public domain in respect of urinary tract infection which, based on the reasonable opinion of its volunteers, it considers to be from a reliable or authoritative source. Should you require more information or medical help, please consult your doctor.
A young adult writes of her experiences as a child:
“I developed a chronic UTI as a result of recurrent childhood urinary infections which were repeatedly misdiagnosed and left untreated, resulting in severe bladder and kidney symptoms which left me with a diagnosis of interstitial cystitis. I am now 22 years old and this condition has stripped me of my entire childhood.
“I started to develop symptoms of severe urinary frequency and urgency when I was 6 years old. When my parents initially took me to see my GP, a urine dipstick was carried out and showed no signs of infection. A subsequent culture showed insignificant bacterial growth, resulting in no further treatment. When my symptoms subsequently worsened over the next 3 months, further negative dipsticks and cultures were carried out and I was misdiagnosed with overactive bladder syndrome. By this time, my urinary frequency had progressed to the point where I was urinating every 10 minutes and could not be away from a toilet for any length of time. My parents and school teachers were advised to encourage me to train my bladder to hold more urine by withholding access to a toilet, which resulted in such severe pain and embarrassment that I became terrified of going to school and missed a significant amount of my primary school education.
“Coincidentally, recurrent ear infections throughout my childhood meant that I was prescribed numerous short courses of antibiotics, which somewhat helped to reduce my bladder symptoms. However, my symptoms would recur quickly after the antibiotic course was finished. Despite this clear correlation in symptoms, any suggestion of an infection was dismissed repeatedly by my GP.
“I battled through my teenage years with fluctuating bladder symptoms that often left me leaving the classroom several times during school lessons and avoiding school trips and social interaction for fear of suffering bladder symptoms. When I was 17, I suddenly developed a severe worsening of symptoms, resulting in immense burning during urination, severe urgency, severe bladder pain and a sensation that I had a boiling hot marble stuck in my urethra. I saw my GP, who diagnosed me with a UTI based on my symptoms and prescribed me with a week-long course of antibiotics. However, despite a slight improvement in my symptoms during this time, the symptoms continued to linger. When my GP subsequently sent my urine off for culture, it revealed mixed growth of doubtful significance, and I was diagnosed with “post-UTI irritation” and placed on oxybutynin. This pattern of events continued to repeat over the next 3 months, with numerous short 3-day courses of antibiotics, oxybutynin, Vesicare and amitriptyline being prescribed in an attempt to relieve my pain.
“Over the course of the next 2 years, my symptoms continued to worsen. I saw my GP hundreds of times and was referred to a total of two urogynaecologists and two urologists, all of whom either diagnosed me with overactive bladder or interstitial cystitis, and one of who claimed that my symptoms were psychological in nature and that my brain was simply “wired differently” to everyone else. I underwent two urodynamic studies, three KUB ultrasounds and two rigid cystoscopies under anaesthetic, the second of which I also underwent a ureteroscopy, retrograde study, urethral dilation, ureter dilation and bladder distension following a misdiagnosis of kidney stones after a poor-quality CT scan. Unfortunately, these investigations caused a massive deterioration in my symptoms and I was hospitalised on multiple occasions with severe uncontrollable pain and vomiting, kidney infections, urinary retention and passing frank blood clots that were so thick that I was unable to pass urine. Each time I was admitted to hospital and given IV antibiotics, my symptoms would improve dramatically, only to relapse as soon as the course had finished.
“By the time I self-referred to ***** private clinic in 2015, I was near suicidal with pain. My symptoms included severe, debilitating pain in my urethra, bladder, kidneys and vagina, urine retention that frequently left me unable to pass urine for 24 hours at a time, significant voiding issues and incredible urgency which felt as though my bladder was tying itself in knots. I frequently passed thick blood clots, and the immense urethral burning that plagued me with this condition felt as though someone had filled my urethra with petrol and set it on fire. I often awoke at night screaming with pain because the pain of leaking urine in my sleep was so terrifying that I often thought I was being attacked.
“[The clinic] diagnosed me with a chronic UTI via microscopy on a fresh, unspun urine sample and immediately placed me on an extended course of antibiotics. Although my progress has been slow as a result of so many years of inadequate treatment resulting in a deeply embedded infection, I have finally reached the stage where my symptoms are under control and I do not require the care of urologists or my GP with regards to my bladder symptoms. I am now able to live a relatively normal life with minimal bladder symptoms, and I have returned to work and university. However, as a result of the extensive strain that my untreated chronic UTI has placed on my autonomic nervous system over the past 16 years, I have been diagnosed with postural orthostatic tachycardia syndrome, inappropriate sinus tachycardia and gastrointestinal motility problems, thought to be due to gastroparesis, which are likely to be ongoing issues throughout my life.
“My greatest regret is that so many opportunities were missed to treat my symptoms when I was a child. Had I been given early access to treatment, my lifelong suffering could have been entirely preventable. I can only hope that in the future, children like myself will not be confined to the suffering and trauma that I have experienced.” [i]
[i] Malone-Lee, J., Cystitis Unmasked, 2021, pp241-244, tfm Publishing Limited, Castle Hill Barns, Harley, Shrewsbury, UK https://www.tfmpublishing.com/cystitis-unmasked
Table of Contents
×A young adult writes of her experiences as a child:
“I developed a chronic UTI as a result of recurrent childhood urinary infections which were repeatedly misdiagnosed and left untreated, resulting in severe bladder and kidney symptoms which left me with a diagnosis of interstitial cystitis. I am now 22 years old and this condition has stripped me of my entire childhood.
“I started to develop symptoms of severe urinary frequency and urgency when I was 6 years old. When my parents initially took me to see my GP, a urine dipstick was carried out and showed no signs of infection. A subsequent culture showed insignificant bacterial growth, resulting in no further treatment. When my symptoms subsequently worsened over the next 3 months, further negative dipsticks and cultures were carried out and I was misdiagnosed with overactive bladder syndrome. By this time, my urinary frequency had progressed to the point where I was urinating every 10 minutes and could not be away from a toilet for any length of time. My parents and school teachers were advised to encourage me to train my bladder to hold more urine by withholding access to a toilet, which resulted in such severe pain and embarrassment that I became terrified of going to school and missed a significant amount of my primary school education.
“Coincidentally, recurrent ear infections throughout my childhood meant that I was prescribed numerous short courses of antibiotics, which somewhat helped to reduce my bladder symptoms. However, my symptoms would recur quickly after the antibiotic course was finished. Despite this clear correlation in symptoms, any suggestion of an infection was dismissed repeatedly by my GP.
“I battled through my teenage years with fluctuating bladder symptoms that often left me leaving the classroom several times during school lessons and avoiding school trips and social interaction for fear of suffering bladder symptoms. When I was 17, I suddenly developed a severe worsening of symptoms, resulting in immense burning during urination, severe urgency, severe bladder pain and a sensation that I had a boiling hot marble stuck in my urethra. I saw my GP, who diagnosed me with a UTI based on my symptoms and prescribed me with a week-long course of antibiotics. However, despite a slight improvement in my symptoms during this time, the symptoms continued to linger. When my GP subsequently sent my urine off for culture, it revealed mixed growth of doubtful significance, and I was diagnosed with “post-UTI irritation” and placed on oxybutynin. This pattern of events continued to repeat over the next 3 months, with numerous short 3-day courses of antibiotics, oxybutynin, Vesicare and amitriptyline being prescribed in an attempt to relieve my pain.
“Over the course of the next 2 years, my symptoms continued to worsen. I saw my GP hundreds of times and was referred to a total of two urogynaecologists and two urologists, all of whom either diagnosed me with overactive bladder or interstitial cystitis, and one of who claimed that my symptoms were psychological in nature and that my brain was simply “wired differently” to everyone else. I underwent two urodynamic studies, three KUB ultrasounds and two rigid cystoscopies under anaesthetic, the second of which I also underwent a ureteroscopy, retrograde study, urethral dilation, ureter dilation and bladder distension following a misdiagnosis of kidney stones after a poor-quality CT scan. Unfortunately, these investigations caused a massive deterioration in my symptoms and I was hospitalised on multiple occasions with severe uncontrollable pain and vomiting, kidney infections, urinary retention and passing frank blood clots that were so thick that I was unable to pass urine. Each time I was admitted to hospital and given IV antibiotics, my symptoms would improve dramatically, only to relapse as soon as the course had finished.
“By the time I self-referred to ***** private clinic in 2015, I was near suicidal with pain. My symptoms included severe, debilitating pain in my urethra, bladder, kidneys and vagina, urine retention that frequently left me unable to pass urine for 24 hours at a time, significant voiding issues and incredible urgency which felt as though my bladder was tying itself in knots. I frequently passed thick blood clots, and the immense urethral burning that plagued me with this condition felt as though someone had filled my urethra with petrol and set it on fire. I often awoke at night screaming with pain because the pain of leaking urine in my sleep was so terrifying that I often thought I was being attacked.
“[The clinic] diagnosed me with a chronic UTI via microscopy on a fresh, unspun urine sample and immediately placed me on an extended course of antibiotics. Although my progress has been slow as a result of so many years of inadequate treatment resulting in a deeply embedded infection, I have finally reached the stage where my symptoms are under control and I do not require the care of urologists or my GP with regards to my bladder symptoms. I am now able to live a relatively normal life with minimal bladder symptoms, and I have returned to work and university. However, as a result of the extensive strain that my untreated chronic UTI has placed on my autonomic nervous system over the past 16 years, I have been diagnosed with postural orthostatic tachycardia syndrome, inappropriate sinus tachycardia and gastrointestinal motility problems, thought to be due to gastroparesis, which are likely to be ongoing issues throughout my life.
“My greatest regret is that so many opportunities were missed to treat my symptoms when I was a child. Had I been given early access to treatment, my lifelong suffering could have been entirely preventable. I can only hope that in the future, children like myself will not be confined to the suffering and trauma that I have experienced.” [i]
[i] Malone-Lee, J., Cystitis Unmasked, 2021, pp241-244, tfm Publishing Limited, Castle Hill Barns, Harley, Shrewsbury, UK https://www.tfmpublishing.com/cystitis-unmasked