Your healthcare team will speak with you and your child about any long-term effects your child may have from PUV.
Some boys have normal bladder and kidney function after the PUV are removed. Others will have long-term problems and may need specialist care.
Follow-up
Boys who have been treated for PUV have follow-up appointments. It is important to go to these appointments even if your child seems well. You will also have the opportunity to ask any questions.
Checking bladder function
Bladder function tests check how well your child’s bladder is working. These are usually done by a paediatric urologist, a surgeon who treats babies, children and young people with problems of the urinary system, including the bladder and kidneys, and a specialist nurse.
- An MCUG (sometimes called a VCUG) – this helps confirm whether the PUV are completely removed, and also checks for vesicoureteral reflux (VUR), when some urine goes back up towards the kidney. A catheter is passed through your baby’s urethra and a dye is put through to reach the bladder – this does not hurt your baby. A special X-ray machine takes a series of images (pictures) of your child’s urinary system while he passes urine.
- Urinary flow rate – this measures how much urine your child is passing and the flow of urine. Your child needs to urinate (wee) into a special device fitted to a toilet.
- Ultrasound scans – these look at the bladder, often before and after your child passes urine.
- Urodynamics – this checks how well the bladder and urethra are working. One catheter (a long, thin tube) is passed through the urethra into the bladder, and fills the bladder with water. A second catheter is passed into the back passage (rectum). Both catheters measure pressure in the bladder as it fills and empties.
Checking kidney function
Kidney function tests check how well your child’s kidneys are working. They include:
- blood tests
- urine tests
- ultrasound scans or other imaging tests, such as DMSA and MAG3 scans – to look at their kidneys.
Bladder problems
PUV can cause pressure to build up inside the bladder. If this is severe, the bladder swells, or gets larger. The wall of the bladder may get thicker.
Sometimes these problems continue even after the PUV resection. Some boys cannot empty their bladder – this can make toilet training difficult. Problems may include:
- going to the toilet more often than usual (frequency)
- wetting the bed more often than usual, or wetting themselves because they cannot get to the toilet in time
- feeling like they need to go to the toilet more than usual (urgency).
Medicines
Some boys may benefit from taking medicines. These include:
- oxybutynin and tolterodine, which relax the wall of the bladder. This means the bladder can hold more urine to help your child control it
- desmopressin, which reduces the amount of urine your child’s kidneys make.
Using a catheter to empty the bladder
Some boys need to use special equipment to empty their bladder – this may be for a short or long time. If your child needs to use this treatment, you will be given training and support.
Clean intermittent catheterisation (CIC)
Some boys can use a catheter – a long, thin tube that is placed through the urethra and into the bladder.
- Several times a day, the catheter is placed through the opening of the urethra.
- Urine flows out of the bladder through the catheter and into a bag.
- When the urine stops flowing, the catheter is removed. The bag can be emptied into a toilet.
- Some children leave a catheter in at night while they sleep.
Mitrofanoff
Some boys need a surgical procedure that creates a channel from the bladder to the outside of their tummy. This is called a Mitrofanoff and is created out of another part of the body, such as the appendix and/or bowel.
The opening is usually in the tummy button so it is well hidden. A catheter is placed into the opening to drain urine out of the bladder.
Kidney problems
Some boys will have long-term problems with their kidneys. They may progress to later stages of chronic kidney disease (CKD) – their kidneys gradually stop working properly - this usually happens slowly over many years. These children will need specialist monitoring and treatment.
Some children with CKD progress to final stages of CKD (kidney failure), and need dialysis, which uses special equipment to clean the blood, and/or a kidney transplant.
If your child has progressed to late stages of CKD, you and your child will learn more over time about how to help manage the condition, and what to expect.
Impact on your child and your family
Boys who have been successfully treated for PUV can usually do all of the things that other children their age do. They can go to, or return to, school or nursery. They can play with other children and stay active.
Most children will not need to change their diet, unless they have problems with their kidneys.
Some children need further support. Your doctor or nurse will give you more information, and let you know if you need to speak with someone at your child’s school or nursery.
Further support
This can be a difficult and stressful experience for your child and the whole family, including other children.
If you have any concerns or need additional support, speak with your doctor or nurse.