Question: What is kidney disease?
Answer: Kidney disease is a condition in which the kidneys are damaged and can’t filter the blood the way they should. This damage can cause wastes and fluid to build up in the body. Kidney disease can also cause other health problems.

Acute kidney injury (AKI) is a sudden decrease in kidney function that usually lasts a short time. Although AKI doesn’t last long, it may cause long-lasting effects even after the underlying problem has been treated. If left untreated, AKI can be life-threatening.

Chronic kidney disease  (CKD) develops slowly over a long period of time—usually months to years. CKD may gradually lead to kidney failure. Kidney failure means a person will most likely need a kidney transplant or dialysis soon to stay healthier longer. Kidney failure that is treated with a kidney transplant or dialysis is called end-stage kidney disease, or ESKD.
Question: How common is kidney disease in children?
Answer: Kidney disease is not common in children. Researchers don’t know exactly how many children are affected by kidney disease because many children have few or no symptoms in the early stages of the disease.
Question: Which children are more likely to develop kidney disease?
Answer: CKD is more common in male children than in female children.1 In North America, Black children are two to three times more likely to develop CKD compared with white children.1
Question: What are the complications of kidney disease in children?
Answer: Complications of kidney disease in children may include

anemia
cardiovascular disease, or heart disease
electrolyteimbalances in the blood, especiallypotassium
growth problems, especially shorter-than-average height
high blood pressure, or hypertension
infection
metabolicacidosis
mineral and bone disorder
cognitive issues
urinary incontinence

Kidney disease can also affect children’s lives in other ways, causing problems related to behavior, relationships, and self-esteem. Children with CKD may have difficulty concentrating and learning, and may develop language and motor skills more slowly than their peers. Parents or guardians may want to learn more about ways to care for a child with kidney disease.

Children with kidney disease may experience low self-esteem and have difficulty concentrating and learning.
Question: What are the symptoms of kidney disease in children?
Answer: Children in early stages of kidney disease may have few or no symptoms. As kidney disease gets worse, symptoms may include

swelling in the feet, legs, hands, or face, callededema.
increased or decreasedurineoutput. Some children may have tourinatemore often and maywet the bedat night.
foamy urine due to too muchproteinin the urine, called proteinuria.
pink or cola-colored urine caused by blood in the urine, calledhematuria.

Other symptoms may include

decreased appetite
feeling tired
fever
high blood pressure
itchy skin
nausea or vomiting
shortness of breath
trouble concentrating
weakness
weight loss
stunted growth

Symptoms can vary from child to child, depending on the cause of the kidney disease.
Question: What causes kidney disease in children?
Answer: Kidney disease in children can be caused by

birth defects
hereditary diseases
infection
nephrotic syndrome
systemic diseases
trauma
urine blockage or reflux

Birth defects

Birth defects  that keep the urinary tract from developing normally cause nearly 60% of childhood CKD cases in the United States.1 A birth defect occurs when part of a baby’s body does not develop normally when the baby is in the womb, or uterus. Examples of birth defects that may lead to kidney disease include

renal agenesisor kidney agenesis—when a baby is born missing one or both kidneys
kidney dysplasia—when parts of one or both kidneys don’t develop normally while a baby is developing in the womb
renal hypoplasia—when a baby is born with one or both kidneys that are smaller and have fewernephronsthan normal

Hereditary diseases

A hereditary disease occurs when a parent passes a gene mutation  down to a child. Common hereditary kidney diseases that affect children include

polycystic kidney disease, a disorder that causes cysts to grow in the kidneys, damaging the kidneys over time
Alport syndrome, a condition that affects the outer lining of the cells in the kidneys

Infection

A child may develop kidney disease after having an infection in another part of the body, such as

hemolytic uremic syndrome, a condition that occurs when red blood cells are destroyed and block the kidneys’ filtering system. The syndrome is often caused byEscherichia coli (E. coli)bacteria.
post-streptococcal or postinfectious glomerulonephritis, a disease that occurs when the body’simmune systemproducesantibodiesthat can deposit in the kidneys and cause damage. This disease may develop after an episode of strep throat or a skin infection.

Nephrotic syndrome

Nephrotic syndrome  can develop when tiny filters in the kidney, called glomeruli, become damaged and allow protein to leak from the blood into the urine. Among children older than age 12, diseases that affect the glomeruli are the most common cause of CKD, accounting for approximately 45% of cases.1

Common causes of nephrotic syndrome in children include

minimal change disease, a disorder in which the glomeruli are damaged, but the damage can only be seen using an electron microscope, which shows tiny details at the cellular level
focal segmental glomerulosclerosis, a disease that causes some of the kidney’s glomeruli to become scarred
membranoproliferative glomerulonephritis, a group of disorders that affect the immune system, causing antibodies to build up on a membrane in the kidney, damaging the glomeruli

Systemic diseases

Systemic diseases are diseases that affect many organ systems or the entire body. Lupus nephritis is an example of a systemic disease that often affects the kidneys. Lupus nephritis is a kidney disorder caused by an autoimmune disease  called systemic lupus erythematosus, or lupus.

Trauma

Traumas such as burns, dehydration, bleeding, injury, or surgery can cause very low blood pressure, which decreases blood flow to the kidneys. Low blood flow can lead to acute kidney injury or failure.

Urine blockage or reflux

If a blockage develops between the kidneys and the urethra, urine can flow back up into the kidneys and cause damage. Reflux happens when the valve between the bladder and the ureter does not close all the way, allowing urine to flow backward from the bladder to the kidneys. If the urine in the bladder becomes infected, infected urine can travel backward to the kidneys and cause a kidney infection.
Question: How do health care professionals diagnose kidney disease in children?
Answer: Health care professionals use a child’s medical and family history and a physical exam to diagnose kidney disease. To confirm the diagnosis, health care professionals may use one or more of the following tests

urine tests, to check how well your child’s kidneys are filtering blood and to look for proteins in the urine
blood tests, to test theglomerular filtration rateand to look for underlying diseases
imaging tests, to see the size and shape of the kidneys and identify any abnormalities
kidney biopsy, to check for kidney damage and help identify the cause of the kidney disease
genetic tests, to look  for specific gene mutations

If your child’s health care professional suspects your child has kidney disease, your child may be referred to a pediatric nephrologist—a doctor who specializes in treating kidney disease in children.
Question: How do health care professionals treat kidney disease in children?
Answer: Health care professionals treat kidney disease in children by first treating or controlling any underlying condition that may be causing the kidney damage. They may perform surgery to correct a blockage in the urinary tract or prescribe antibiotics  to treat an infection.

Some children with acute kidney injury may need dialysis—treatment to filter wastes and extra fluids from the blood—for a short time while their kidneys recover.

When a child’s kidney disease is chronic, or long-lasting, treatment may slow the progression of the disease, ease symptoms, and manage complications.

Children with CKD are at increased risk for infections. Vaccines help prevent many diseases that can result from infections. Talk with your child’s doctor about which vaccines are right for your child. Some children with CKD or certain types of kidney diseases may be eligible for the pneumococcal polysaccharide vaccine (PPSV23), which is a vaccine that can prevent some bacterial infections.
Question: How do health care professionals treat complications of kidney disease in children?
Answer: Health care professionals manage the complications of kidney disease in children by prescribing medicines and suggesting changes to what your child eats and drinks.

Medicines

Your child’s health care professional may prescribe

angiotensin-converting enzyme (ACE) inhibitorsandangiotensin receptor blockers (ARBs)to lower blood pressure and help reduce protein loss. Some children with kidney disease may need additional medicines to lower blood pressure and may need to take more than one blood pressure medicine.
diureticsto reduce swelling and lower blood pressure by removing extra fluid from the blood.
erythropoiesis-stimulating agents andironsupplements, to improve anemia by helping the body make more red blood cells.
corticosteroidsor otherimmunosuppressantsto reduce the activity of the immune system and decrease swelling.
phosphate bindersto improve bone development and growth by reducingphosphoruslevels in the blood.
growthhormonetherapy injections to increase growth.
pH-adjusting medications, such assodium bicarbonate, to lower acid levels in the blood.
antibiotics to help fight infection.

Dietary changes

Your child’s health care professional may suggest dietary changes such as

monitoring protein,sodium,potassium, andliquids
limiting phosphorus
taking vitamin and mineral supplements

Talk with your child’s health care professional before making any changes to your child’s diet. Your child’s health care professional may suggest you work with a registered dietitian to create an eating plan with the right foods and nutrients in the right amounts for your child to grow properly and stay healthy.

Your child’s health care professional may suggest changes to what your child eats and drinks to help your child grow and stay healthy.
Question: How do health care professionals treat kidney failure in children?
Answer: If your child’s kidneys become so damaged that they fail, your child will need kidney replacement therapy—kidney transplant, hemodialysis, or peritoneal dialysis—to stay healthy.

Kidney transplant

Kidney failure in children is often treated with a kidney transplant. Some children receive a kidney transplant before they start dialysis. This is called a preemptive transplant. Other children begin dialysis treatment to stay healthy until they can have a transplant.

About one-third of the kidneys transplanted into children are from living donors.2 A kidney from a parent is more likely to be a better match than a kidney from someone who is not related to the child. The wait time for a kidney transplant varies by region of the country and whether the child has antibodies in his or her blood as a result of blood transfusions  or a previous kidney transplant, which may make it harder to find a good donor match.

Hemodialysis

Hemodialysis  usually takes place in a dialysis center three times a week. Some dialysis centers teach parents or guardians how to perform their child’s hemodialysis at home. Health care professionals may recommend more frequent dialysis for smaller children.

Talk with your child’s health care team about any side effects your child experiences after hemodialysis. A health care professional can often manage side effects. You can help prevent many side effects by making sure your child maintains a proper diet and limits liquid intake, as well as takes all medicines as directed.

Peritoneal dialysis

Peritoneal dialysis  is usually performed at home, after parents or guardians and the child complete a training. Children are encouraged to become involved with their peritoneal dialysis treatment as they get older.

An occasional complication of peritoneal dialysis is peritonitis, a serious infection of the peritoneum. During training, caregivers are taught how to prevent peritonitis by washing their hands thoroughly, wearing a surgical mask during dialysis exchanges, and following the dialysis procedures exactly. Report any signs of infection to your child’s health care professional immediately. Quick treatment may prevent additional problems.
Question: Can kidney disease in children be prevented?
Answer: Researchers have not found a way to prevent childhood kidney disease. But getting treatment early and managing the complications can help delay or prevent your child’s kidney disease from getting worse. Work with your child’s pediatrician and kidney care team to help your child stay healthy and be active.
Question: What can I do to keep my child’s kidneys healthy?
Answer: You can help your child with kidney disease by

tracking how much liquid your child consumes, and working with your child’s health care team to figure out the right amount of liquid for your child
following all dietary instructions given by your child’s health care team
making sure your child takes all medicines as prescribed, and telling your child’s health care professional right away if your child is having trouble taking medicines or is experiencing side effects
talking with your child’s health care team before giving your child any medicines,vitamin and mineral supplements, orprobioticsthat haven’t been prescribed for your child
Question: Clinical Trials for Kidney Disease in Children
Answer: The NIDDK conducts and supports clinical trials in many diseases and conditions, including kidney diseases. The trials look to find new ways to prevent, detect, or treat disease and improve quality of life.

Why are clinical trials with children important?

Children respond to medicines and treatments differently than adults. The way to get the best treatments for children is through research designed specifically for them.

We have already made great strides in improving children’s health outcomes through clinical trials—and other types of clinical studies. Vaccines, treatments for children with cancer, and interventions for premature babies are just a few examples of how this targeted research can help. However, we still have many questions to answer and more children waiting to benefit.

The data gathered from trials and studies involving children help health care professionals and researchers

find the best dose of medicines for children
find treatments for conditions that only affect children
treat conditions that behave differently in children than in adults
understand the differences in children as they grow

How do I decide if a clinical trial is right for my child?

We understand you have many questions, want to weigh the pros and cons, and need to learn as much as possible. Deciding to enroll in a study can be life changing for you and for your child. Depending on the outcome of the study, your child may find relief from their condition, see no benefit, or help to improve the health of future generations.

Talk with your child, as well as your child’s pediatrician and pediatric nephrologist, and consider what would be expected. What could be the potential benefit or harm? Would you need to travel? Is my child well enough to participate? While parents or guardians must give their permission, or consent, for their children to join a study, the children must also agree to participate, if they are capable (verbal). In the end, no choice is right or wrong. Your decision is about what is best for your child.

The National Institutes of Health (NIH) is committed to ensuring you get all the information you need to feel comfortable and make informed decisions. The safety of children remains the utmost priority for all NIH research studies. For more resources to help decide if clinical trials are right for your child, visit Clinical Trials and You: For Parents and Children.

What aspects of kidney disease are being studied in children?

Researchers study many aspects of kidney disease in children, such as

ways to improve outcomes after kidney transplant
earlier and more accurate methods for diagnosing acute kidney failure

Watch a video of NIDDK Director Dr. Griffin P. Rodgers explaining the importance of participating in clinical trials.

What clinical studies for kidney disease are available for child participants?

You can view a filtered list of clinical studies on kidney disease in children that are federally funded, open, and recruiting at ClinicalTrials.gov. You can expand or narrow the list to include clinical studies from industry, universities, and individuals; however, the NIH does not review these studies and cannot ensure they are safe. If you find a trial you think may be right for your child, talk with your child’s health care provider about how to enroll.