WARNING: The information in this section is meant as a general guide to help parents and caregivers with common issues and is not intended to replace the care provided by your child’s healthcare team.

Discuss your child’s unique needs with your healthcare team, including WHO and WHEN to contact when problems arise.

 

 

Fever with or without general malaise: (≥ 38⁰C rectal or ≥ 37.5⁰C oral/armpit)

General irritability, poor appetite, fatigue or wanting to sleep more than usual (lethargy)

One or more of these symptoms: decreased urination - increased thirst - dry lips and mouth - faster heart rate than usual - weight loss

Abdominal discomfort, pain and/or burning at the meatus or urethra

Urine has an unusual odor or is milky, not clear

The urine does not flow or flows more slowly than usual through the catheter

Urinary incontinence (leakage) between catheterizations

The catheter is difficult to insert

The catheter is difficult to remove

Bleeding after catheterization

Skin around the Mitrofanoff stoma: red swollen itchy, burns, small bumps, abrasions or bleeding

Movement of the Mitrofanoff stoma is more than 0.5 cm from its usual position, whether sinking in or protruding out

Do not hesitate to refer to your child’s healthcare team for any questions or for specific advice related to your child’s condition.

When to consult your healthcare team

General state of health

When your child has any of the following symptoms:

  • Fever (≥ 38oC rectal or ≥ 37.5oC oral or ≥ 37.5 o C armpit)
  • General irritability, poor appetite, fatigue or wanting to sleep more than usual (lethargy)
  • Signs and/or symptoms of dehydration:
    • Decreased urination
    • Increased thirst
    • Dry lips and mouth
    • Faster heart rate than usual
    • Weight loss
  • Abdominal discomfort
  • Feeling the urge to pee more often (frequency)
  • Pain and/or burning while peeing (dysuria)
  • Nausea or vomiting

Urine

  • Any increase or decrease in the amount of urine collected by catheterization, for more than a day and for no apparent reason.
  • Any change in urine color, appearance or foul odor, especially compared to your child’s norm.
  • Lack of urine flow OR the urine flows slower than usual through the catheter.
  • Your child leaks urine/cannot control their bladder between catheterization (urinary incontinence).

Catheterization

  • Difficulty inserting or removing the catheter.
  • Bleeding frequently and for more than a few drops after catheterization.

Mitrofanoff stoma

  • The skin around the stoma is red or irritated (small bumps or skin injury).
  • The stoma changes appearance.
  • The stoma protrudes or sinks in more than 0.5 cm.
  • The stoma is bleeding.

Your child’s healthcare team will take the opportunity during your child’s follow-up appointments to review your child’s care and equipment.  Adjustments will be made as required.

Do not hesitate to refer to your child’s healthcare team for any questions or for specific advice related to your child’s condition.