Chronic Kidney Disease | Diagnosis & Treatment

How is chronic kidney disease diagnosed?

The first step in treating your child is forming an accurate and complete diagnosis. It’s important to remember that diagnosis for chronic kidney disease can be thought of in two ways: diagnostic tests that indicate a problem with your child’s kidneys, and kidney function tests that tell us how well they are working.

Diagnostic tests

Since children with chronic kidney disease rarely show symptoms in the beginning, it often goes undiagnosed until its later stages. Your child’s pediatrician should be monitoring for it during regular check-ups by:

  • performing routine urinalyses and looking for protein in your child’s urine (called “proteinuria”)
  • checking your child’s blood pressure

The diagnostic process often begins when your child’s pediatrician notices protein in your child’s urine during a routine urinalysis, a sign (though not a conclusive one) of kidney disease.

If your child has the signs associated with nephrotic syndrome (NS), their doctor will most likely start them on steroid treatment. The majority (80 to 90 percent) of children respond to steroid treatment, and within eight to 12 weeks, the symptoms disappear. This is known as “minimal change nephrotic syndrome,” and it can come and go, like asthma. Many children outgrow minimal change nephrotic syndrome after a few years.

NS that doesn’t respond to steroid treatment is thought to have a different cause. If your child’s NS doesn’t respond to steroid treatment, their doctors may order further diagnostic tests including:

  • Kidney biopsy: A small sample of tissue is taken from through a needle and sent to a lab for analysis. The biopsy may indicate focal segmental glomerulosclerosis (FSGS) or the presence of another acquired disease, such as lupus.
  • Kidney ultrasound: A non-invasive test in which a transducer is passed over the kidney producing a picture of the organ on a video screen. The test is used to determine the size and shape of the kidney, and to detect a mass, kidney stone, cyst or other obstruction or abnormalities.
  • Nuclear medicine study: A non-invasive, painless tests that can reveal important information about your child's health. Nuclear medicine uses short-lived radiopharmaceuticals and specialized cameras to create images of the human body.

Kidney function tests

There are two main ways to test your child’s kidney functioning: by measuring creatinine level and glomerular filtration rate (GFR).

  • Creatinine is a waste product that the body makes in a constant amount (depending on muscle mass) each day. It can only leave the body through the kidneys, so a higher creatinine level indicates decreased kidney functioning. Creatinine level is checked through a simple blood test.
  • Glomerular Filtration Rate Test  is a measure of how efficiently your kidneys are able to filter your blood.

Other blood tests may be used to check cholesterol level, and for the level of a blood protein called albumin.

How your child feels

In addition to the results of these tests, we also look at your child’s symptoms and how he feels. Despite having a high creatinine level, if he’s feeling well and going to school, it’s probably not time to go on dialysis or have a kidney transplant.

After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we’ll meet with you and your family to discuss the results and outline the best treatment options.

It's entirely natural that you might be concerned right now about your child's health; a diagnosis of chronic kidney disease can be frightening. But you can rest assured that at Boston Children's Hospital, your child is in good hands. Our physicians are bright, compassionate and committed to focusing on all of your child's needs, not just his condition.

How is chronic kidney disease treated?

Treatment for stages 1, 2, 3 and 4

If your child is diagnosed in stages 1, 2, or 3 of CKD, they probably won't have many symptoms, but their kidneys won't be functioning the way that they should, which can lead to complications.

If your child's kidneys aren't properly regulating the acid levels in the blood, this may result in a condition called acidosis, which doesn't have any symptoms. We can treat acidosis with bicarbonate, an oral medicine that balances the acid levels.

The kidneys regulate the level of calcium and phosphorous (minerals necessary for bones to continue to grow) in your child's body. If they begin to lose the ability to do this, we can supplement those minerals with activated vitamin D, medicines that prevent the absorption of calcium and phosphorous, and regulating diet.

Your child's blood pressure may start to go up, and if we treat this with blood pressure medication early on, we can minimize the risk of cardiovascular disease as the condition progresses.

If your child's kidneys aren't making erythropoietin (EPO), a hormone that regulates how the body makes red blood cells, she may develop anemia and experience weakness, fatigue and/or have trouble concentrating. To relieve these symptoms, we may recommend EPO be given as a shot at home, usually weekly or every other week. Many symptoms associated with chronic kidney disease are related to anemia, so this treatment has a very good chance of making your child feel better.

Your child's growth rate may be affected. If this happens, we can give them growth hormones. This is given as a shot every night at home.

If your child is in stage 4, their doctors may also take some steps to get them ready for treatment in stage 5. Often this involves a course of dialysis before transplant.

Treatment for stage 5 CKD (end-stage renal disease)

Stage 5 is defined as end-stage renal disease, at which point your child needs to go on dialysis or have a kidney transplant. Both are effective treatments, and our goal is to transplant virtually all of our patients with ESRD. Around 75 percent of children with ESRD go on dialysis before receiving a transplant.

One of the roles of your child's kidneys is to act as a filter for their blood, making sure that it has the right balance of water and minerals. If your child's kidneys are unable to do this, dialysis is a procedure that can do it for them. Dialysis may be given every night at home, or at a hospital or dialysis center three or four times a week.

In some children, including those with the severe form of FSGS or familial hemolytic uremic syndrome (HUS), the disease causes the kidney to fail almost as soon as it is transplanted. In other cases, it may not be a good time for the family to have the child undergo a transplant. The good news is that a kidney transplant is very rarely an emergency, and never absolutely necessary, because dialysis is such an effective treatment.