Also called: Chronic Renal Disease

Chronic kidney disease is when the kidneys are damaged over time and can't work as well as they should to filter blood.

If your child has been diagnosed with chronic kidney disease, here's what to expect.

What Does "Chronic" Kidney Disease Mean?

Many health conditions can become "chronic" — meaning they last a long time or happen again and again over time.

When kidney disease becomes chronic, it means the kidneys are damaged and can't properly do important jobs like:

• filter waste products out of the blood, such as toxins and extra water, which helps keep chemicals in the body balanced
• release substances that stimulate the bone marrow to make red blood cells, help control blood pressure, and help bone growth

When a child has chronic kidney disease, doctors watch for problems like high blood pressure, anemia (low red blood cell count), and growth problems. Kids may feel sick at times, need to take medicines, and watch what they eat and drink.

Over time, someone with chronic kidney disease might develop kidney failure (or end-stage kidney disease), which is when the kidneys can no longer do their jobs at all. Then, the person will likely need a kidney transplant or dialysis.

What Can Cause Chronic Kidney Disease in Children?

In kids, different problems can cause it, such as:

• urinary tract problems that developed before birth
• problems with the tiny filters in the kidneys (glomeruli), like minimal change disease or focal segmental glomerulosclerosis (FSGS). These often start with nephrotic syndrome.
• some types of infections
• other health problems that also the kidneys (such as lupus)
• vesicoureteral reflux (when pee moves backward from the bladder to the kidneys)

How Is Chronic Kidney Disease Diagnosed?

Doctors diagnose chronic kidney disease based on a child's medical history, an exam, and medical tests, such as:

• urine tests
• blood tests
• imaging studies
• genetic tests

If the results indicate a kidney problem, the doctor will want the child to see a nephrologist (a doctor who diagnoses and treats kidney problems). The nephrologist can check for many kidney diseases by doing a kidney biopsy. Based on the biopsy results and how long the child has had kidney disease, they can make a diagnosis of chronic kidney disease.

How Is Chronic Kidney Disease Treated?

Chronic kidney disease treatment focuses on:

• Keeping the child healthy. This includes going for regular checkups and getting all recommended vaccines.
• Treating and slowing down the kidney disease.

Treatment begins with medicines and diet changes:

Medicines

Your child may need to take several medicines, including vitamins, calcium, bicarbonate, and blood pressure pills. In some kids, injectable medicines can help treat anemia and growth problems.

It can help to set reminders or alarms on your phone or other device (and your child's, if they're old enough) with the times these need to be taken.

If the medicine affects your child's appetite, call the doctor for advice. Try to find forms of medicine (smaller pills, capsules, gummies, or more concentrated liquids, for example) that are easier for your child. If the schedule is complex, ask your doctor for help to make it simpler.

Dietary Changes

Because the kidneys can't filter blood as they should, kids with chronic kidney disease can have problems with minerals (like sodium, phosphorus, or potassium) staying in the blood and building up. Kids need protein to grow, but too much can make the kidneys work too hard. So the care team often will advise parents on a diet that lets kids get the amounts they need. The team usually includes a dietitian who specializes in the needs of kids with kidney disease.

Dialysis and Kidney Transplant

When the kidneys stop removing enough waste and extra water from the blood, the person has kidney failure.

When a child has kidney failure, two treatment options can take over the work of the kidneys — dialysis and kidney transplant.

Dialysis

Dialysis does the work of the kidneys to clean the blood when the kidneys can’t, but it doesn’t fix or cure kidney failure. There are two types of dialysis:

1. Hemodialysis (hee-moh-dye-AL-ih-sis): An artificial filter cleans the blood outside of the body. It's usually done in a special clinic called a dialysis center.
2. Peritoneal dialysis (pair-eh-tih-NEEL dye-AL-ih-sis): This uses the lining of the belly as a filter. Often, it can be done at home overnight.

Both types of dialysis clean the blood, but in different ways. If your child needs dialysis, the care team can help you figure out what works best for your child and your family.

Kidney Transplant

Many kids with kidney failure eventually get a kidney transplant. If no matching relative is available to donate a kidney, your child might need dialysis until an unrelated donor kidney is available. While you wait for a donor kidney, you'll stay in close touch with the doctors and the health care team. They should know how to always reach you. When a kidney is located, you'll need to go to the transplant center right away.

What Else Should I Know?

There's a lot to manage when your child has chronic kidney disease. Turn to the care team for help and support.

It also can help to find a kidney disease support group. The care team might be able to recommend one in your area. You also can find more information online at:

• National Kidney Foundation
• Renal Support Network