Chronic UTI Symptoms in Children

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.

Incidence of UTI in children

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.

Common UTI symptoms 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

More information on common symptoms associated with chronic UTI can be found here

WHEN TO SEEK URGENT MEDICAL ATTENTION

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

UTI testing and treatment guidelines for children

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 paediatric chronic UTI

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.

Australian research

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

 

American research

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

Go to their website

The importance of paediatric chronic UTI research

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.

What are the symptoms of 
chronic UTI in children?

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 symptoms.

What to do if you think your child has a chronic UTI?

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

  1. Keep copies of your child’s UTI test reports.
  2. Educate yourself on chronic UTI.
  3. Visit our ‘What to do if you think you have a chronic UTI’ page on our website for more information about preparing for an appointment with your doctor to discuss chronic UTI. This page is written for adults but can also be applied to your child.

The Better Health Channel also shares useful tips on how to prepare for an appointment with your doctor.

Go to their website

UK advocacy for chronic UTI in children

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.

ARTICLES

REFERENCES

  1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9865477/
  2. https://journals.lww.com/pidj/abstract/2008/04000/prevalence_of_urinary_tract_infection_in.4.aspx
  3. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30676-0/abstract
  4. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10828737/
  5. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2907613/
  6. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2907613/
  7. https://www.rch.org.au/clinicalguide/guideline_index/Urinary_tract_infection/
  8. https://www.sahealth.sa.gov.au/wps/wcm/connect/ebd4e56e-7ae1-408d-b3b1-20c75f9f12de/Urinary+Tract+Infection+in+Children_Paed_v1_0.pdf?MOD=AJPERES&CACHEID=ROOTWORKSPACE-ebd4e56e-7ae1-408d-b3b1-20c75f9f12de-oc-W96p
  9. https://www.childrens.health.qld.gov.au/for-health-professionals/queensland-paediatric-emergency-care-qpec/queensland-paediatric-clinical-guidelines/urinary-tract-infection
  10.  https://pch.health.wa.gov.au/For-health-professionals/Emergency-Department-Guidelines/Urinary-tract-infection
  11. https://www.schn.health.nsw.gov.au/urinary-tract-infection-uti-factsheet
  12. https://www.racgp.org.au/afp/2016/august/paediatric-urinary-tract-infections-diagnosis-and
  13. https://www.chronicutiaustralia.org.au/wp-content/uploads/2024/04/The-Weekend-Australian.3Feb2024.pdf
  14. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3697662/
  15. https://www.chronicutiaustralia.org.au/chronic-uti/how-chronic-uti-forms/
  16. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3868479/
  17. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4617679/
  18.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1750882/
  19.  https://www.science.org/doi/10.1126/sciadv.adi9834
  20.  https://pubmed.ncbi.nlm.nih.gov/31455657/
  21.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4457377/
  22.  https://www.ics.org/Abstracts/Publish/180/000123.pdf
  23.  https://pubmed.ncbi.nlm.nih.gov/18092884/
  24.  https://academic.oup.com/femspd/article/doi/10.1093/femspd/ftae012/7681980?login=false
  25.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6801050/
  26.  https://www.theguardian.com/society/2019/feb/20/in-pain-all-the-time-will-there-ever-be-relief-for-women-with-chronic-life-changing-utis?fbclid=IwAR0w6KQg8mfqrGj_D3WgldLUyVy27aNI751BuTHbDqPvw8-QvQzxYHxS-eI
  27.  Malone-Lee, J., Cystitis Unmasked, 2021, pp241-244, tfm Publishing Limited, Castle Hill Barns, Harley, Shrewsbury, UK https://www.tfmpublishing.com/cystitis-unmasked