Chronic kidney (renal) disease Symptoms & Causes

We understand that you may have a lot of questions when your child is diagnosed with chronic kidney disease:

  1. What is it?
  2. What are the treatments?
  3. Will my child need to be hospitalized?
  4. How will it affect my child long term?

We’ve tried to provide some answers to those questions here, and when you meet with our experts, we can explain your child’s condition and options fully.

What is chronic kidney disease?

Chronic kidney disease refers to the kidney’s progressive inability to perform its functions, regardless of the cause. These functions include:

  • cleaning your child’s blood – removing waste, toxins and extra fluid and maintaining the right chemical balance
  • regulating vitamins and minerals that help your child’s bones grow and develop
  • releasing hormones and vitamins that:
    • regulate the level of red blood cells that your child’s body produces;
    • help control your child’s blood pressure
    • regulate the amount of certain nutrients that stay in your child’s body, including calcium and potassium

What are the stages of CKD?

Your child’s stage of CKD is primarily determined by her glomerular filtration rate (GFR) – a measurement of how effectively her kidneys are filtering blood. According to the National Kidney Foundation, there are five stages of chronic kidney disease:






kidney damage with normal or increased GFR

≥ 90

diagnosis, measures to reduce risk of cardiovascular disease


kidney damage with mild decreased GFR


estimating progression of condition


moderate decreased GFR


evaluating and treating complications


severe increased GFR


preparation for dialysis or transplant


kidney failure

< 15

dialysis or transplant

Keep in mind that this chart is a guide, and every child may experience symptoms differently. Since chronic kidney disease is progressive, many who have it will eventually reach Stage 5, but there are things we can do to slow the progression and minimize complications. 

How common is CKD?

CKD is common in the United States. In fact there are more people with CKD (around 29 million) than there are with diabetes. In children, however, it’s very rare.

What risks are associated with CKD?

Complications may develop such as:

  • high blood pressure
  • anemia (low levels of red blood cells)
  • weak bones
  • malnutrition
  • growth failure
  • nerve damage

Since these complications are largely treatable, it’s important that kidney disease be diagnosed as early as possible.


What causes CKD in children?

It’s a complicated question. Remember that CKD refers to a state in which the kidneys aren’t working properly. This could be due to a malformation, a build-up of scar tissue on the kidneys or other causes.

About half of all childhood cases of CKD are due to congenital (present at birth) abnormalities of the kidneys or bladder, such as:

  • obstruction to kidneys that can prevent blood from getting to them
  • reflux from bladder back up into kidneys that can cause chronic infection
  • dysplastic kidneys that were never formed correctly, and cannot function as they should

For the other half of children with CKD, it may be caused by one or more acquired conditions. Many cases are linked to nephrotic syndrome, a collection of symptoms and signs centered around four major components:

  1. protein in urine
  2. low levels of protein in the blood since it’s being lost in the urine
  3. swelling in the body (edema), particularly around the ankles and eyes. This happens because the proteins that hold water inside your child’s blood vessels are lost in the urine, so water seeps into the body’s tissues.
  4. high cholesterol - to compensate for the low levels of protein, the body makes fat in the form of cholesterol.


Focal segmental glomerulosclerosis (FSGS)

Sometimes nephrotic syndrome is caused by a serious condition called focal segmental glomerulosclerosis (FSGS). FSGS causes scarring on the parts of the kidneys that filter the blood. It’s challenging to treat because:

  • Its exact causes are unclear.
  • It can recur in a newly-transplanted kidney, sometimes within hours.

FSGS and other conditions that cause scarring of the kidney tend to worsen over time because scar tissue causes the kidneys to have to work harder, which in turn causes more scar tissue to form.

Children’s researcher Elizabeth J. Brown, MD, has discovered a gene linked with FSGS. These discoveries are critical to determining what causes the disease, and how an effective treatment can be developed.

Other factors that may cause CKD include:

It’s important to note that the causes of CKD in adults tend to be different. Most often, adult CKD is caused by diabetes, hypertension and simply aging.


What are the symptoms of CKD?

CKD is challenging to diagnose early because in its earliest stages, it often doesn’t cause visible symptoms. When symptoms do appear, they’re often non-specific, and don’t necessarily indicate a problem with your child’s kidneys. Some of these symptoms include:

  • fatigue
  • problems concentrating
  • trouble sleeping, restless leg syndrome
  • generally feeling unwell
  • fever
  • loss of appetite

Children usually aren’t in pain, unless they have an infection in the kidneys or another organ.


Q: What’s the long-term outlook for my child?
Unfortunately, at present, chronic kidney disease cannot be cured. The good news is twofold: we can often slow the progression, and we have two good ways of treating end-stage renal disease through dialysis and kidney transplant. 

Q: When will my child need a transplant or dialysis?
It’s completely understandable to want to know what the future holds, but the truth is that it’s impossible to predict how quickly CKD will progress to end-stage renal disease. We know CKD will progress to end-stage renal disease, but it could take five days, five years or 50 years.

Q: Shouldn’t my child have a kidney transplant sooner rather than later?
This is a concern that many parents have, but since transplanted kidneys function for a limited number of years (around 20 years for a kidney from a living donor, and 10 for a kidney from a deceased donor), it’s best to not undergo a transplant until it becomes necessary.

Q: What resources are available to help pay for dialysis or a kidney transplant?
In 1972, Congress passed the End Stage Renal Disease Act, ensuring that Medicare will cover dialysis and kidney transplants for anyone with end-stage renal disease who is eligible for social security, including children.

Questions to ask your doctor

After your child is diagnosed with chronic kidney disease, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you.

Lots of parents find it helpful to jot down questions as they arise – that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed.

If your child is old enough, you may want to suggest that she write down what she wants to ask her health care provider, too.

Some of the questions you may want to ask include:

  • Is there anything besides kidney disease that could be causing my child’s symptoms?
  • What’s the best treatment for my child right now?
  • How much experience does this institution have in treating children with CKD? With dialysis? With transplant?
  • What nutritional concerns should I be aware of?