CHRONIC kidney disease (CKD) in children is rare, but not unheard of.
Any kidney condition that persists more than three months is known as CKD.
Based on a consensus of seven major hospitals with paediatric nephrology services in the country, there are about 377 children with CKD ranging from stage three to five in 2021 without the need for dialysis yet.
It is vital for parents to be educated about CKD in young children, in order to better prepare themselves and their child for what is to come.
In conjunction with Rare Disease Day, NST spoke with consultant paediatric nephrologist Dr Yiaw Kian Mun from Sunway Medical Centre, Sunway City to shed light on the situation.
Having received medical training in Malaysia and Australia, Dr Yiaw's work involves diagnosing, treating and managing disorders affecting the kidney and urinary tract in children.
This includes kidney failure, high blood pressure, inherited kidney diseases, kidney stones, urinary tract infections and abnormalities in the urine such as blood and protein.
CAUSES AND SYMPTOMS
According to Dr Yiaw, the most common causes of CKD in children are congenital anomalies — birth defects (25 to 50 per cent), and primary glomerulonephritis — the inflammation of tiny filters in the kidneys (17 to 31 per cent).
"Usually, congenital anomalies will present themselves during the infancy period.
"As for primary glomerulonephritis, it depends on the type, but it will surface later. Nephrotic syndrome usually surfaces in children aged two to three years old. As for nephritis, it sometimes occurs even later, probably during school-going age," he explained.
The symptoms of CKD usually occur when the kidney function is less than 30 percent, and include poor weight gain, anaemia, electrolyte imbalance and more. However, the symptoms vary according to the different causes.
"Children with congenital anomalies are prone to urinary tract infections (UTI), so an infection is most likely the first symptom to occur. For nephritis, they may experience joint pain, red urine and skin rashes," he said.
EARLY DIAGNOSIS A MUST
Dr Yiaw believes that parents should not brush aside issues their children are experiencing, which may be kidney related.
"For example, if a baby comes to me with a fever and no other symptoms, I would probably think that it might be a UTI and send their urine to test for infection.
"So the main thing here is that early detection is usually overlooked. The prevalence of UTI among infants or young children intending to come to the Emergency Department for fever is actually 6 to 8 per cent without other potential sources.
"UTI is one of the common infections in children. If you leave it undiagnosed, it can cause renal scarring and eventually cause hypertension," he said.
When asked about the treatments involved, Dr Yiaw said that it depends on the causes of CKD. For instance, doctors may provide medication to treat complications such as leaking protein in urine, UTIs, hypertension, electrolyte anomaly or high amounts of potassium or acid.
Dr Yiaw said: "Ultimately, we want to slow the progression of CKD as much as possible. So, every stage of CKD has its own treatments. First, you must treat the cause. If you cannot treat the cause, you need to reduce the progression."
DEALING WITH CKD AT A YOUNG AGE
The harsh truth is that CKD can be especially tough on children, and for a number of reasons.
Unlike adults, children may not comprehend their disease very well. This leads to them refusing to take the medication required to treat their condition.
Another challenge faced by children is growth. Due to the morbid condition, their growth is stunted and will require 1.5 to 2 the normal nutritional needs of a normal child of comparable age.*
"Even when they eat like normal children they cannot grow. All these nutritional supplies cost a bomb to the family. Not every family has the capacity to support their child's nutritional needs.
"Based on our rough estimation, to help children with CKD stage three and above to grow, regardless of whether they are going through dialysis or not, they would need about RM4,000 to RM6,000 per month to meet their specific nutritional need, not mentioning the cost incurred if growth hormone is to be used to augment their growth," he said.
What is also worrying is that not every family has a healthy donor to provide a kidney to their child. The organ donation rate is very low in Malaysia, forcing children to wait 10 to 15 years on dialysis before they receive a kidney.
"We cannot dialyse everyone. The smaller you are, the more challenges and complications you will encounter during dialysis, with an increased risk of mortality," he said.
PARENTS' ROLE
Dr Yiaw advises parents not to opt for uncertified therapy for CKD.
"There are some parents who choose to believe in all these things. They don't want to follow an actual doctor's advice."
He outlines the following pointers when it comes to providing the best care for children with CKD:
- Proper pregnancy care. Early use of folate, and avoid medicine that can potentially affect the baby's kidney development
- Judicious use of medicine/conventional therapy/supplements
- Should the child be treated for any kidney problem, adhere to the instructions provided by certified practitioners
- Watch out for any subtle signs of renal disease (fever may hinder a bigger threat)
References:
*Energy and protein requirements for children with CKD 2-5 and on dialysis - clinical practice recommendations from the paediatric renal nutrition taskforce, Vanessa Shaw, Pediatric Nephrology (2020).