Chronic kidney (renal) disease

  • In the past, the phrase “kidney failure” has been used to mean end-stage renal disease (ESRD) - when dialysis or a kidney transplant is necessary because the kidneys have lost around 85 percent of their function. Now the phrase “kidney failure” is falling out of favor, and being replaced with chronic kidney disease (CKD).

    • ‘Chronic kidney disease’ can be used to refer to people in the earliest stages of the disease, people who have moderate degrees of the disease, and people who already have end stage renal disease.
    • Chronic kidney disease is progressive, and ends in ESRD.
    • ESRD can be treated effectively by either dialysis or a kidney transplant.

    How Boston Children’s Hospital approaches chronic kidney disease

    Our Division of Nephrology is the largest pediatric nephrology service in the United States. We care for patients with a wide range of kidney disorders, and we are home to the largest kidney transplant program in New England dedicated to caring for children.

    Our seven-bed dialysis unit is the only full-service pediatric dialysis unit in New England. If your child requires dialysis, our dialysis nurses, dieticians, tutors and Child Life specialists will do everything they can to make sure your child is comfortable during her treatments. Read more about dialysis.

    Our compassionate caregivers know that your child is a person, not just a patient, and depending on your particular situation, we provide support services for your child and your family throughout all stages of treatment and recovery.

    Chronic kidney disease: Reviewed by William Harmon, MD
    © Children’s Hospital Boston, 2010

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

    • What is it?
    • What are the treatments?
    • Will my child need to be hospitalized?
    • 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?

  • 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), her doctor will most likely start her 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, her 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 her 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 she feels. Despite having a high creatinine level, if she’s feeling well and going to school, it’s probably not time for her 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.

    Treatment for stages 1, 2, 3 and 4

    If your child is diagnosed in stages 1, 2, or 3 of CKD, she probably won't have many symptoms, but her kidneys won't be functioning the way that they should, which can lead to complications. Here's how we treat these complications:

    If your child's kidneys aren't properly regulating the acid levels in her 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 her 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 her growth hormones. This is given as a shot every night at home.

    If your child is in stage 4, her doctors may also take some steps to get her 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 her 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 her. 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.

    Kidney Transplantation

    A kidney transplant is an operation in which the surgeon implants a new kidney from a living or deceased donor.

    Coping and support

    Dealing with chronic illness can be very difficult, but you are never alone. We understand that it can be very upsetting when your child is diagnosed with CKD, or is progressing through the stages. There are many resources available to help you and your family cope during difficult times. Here are a few to get you started:

    Patient education: From the first office visit, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have —What symptoms might my child have? What do we do next? They will also reach out to you by phone, continuing the care and support you received while at Children's.

    Parent to parent: Want to talk with someone whose child has been diagnosed with CKD? We may be able to put you in touch with other families who can share their experience.

    Faith-based support: If you are in need of spiritual support, we will help connect you with the Children's chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your hospital experience.

    Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties.

    On our For Patients and Families site, you can read all you need to know about:

    • getting to Children's
    • accommodations
    • navigating the hospital experience
    • resources that are available for your family

    Outside of Children's, the National Kidney Foundation has lots of information on its website. Some links you might find helpful:

  • Children’s Hospital Boston is home to the world’s most extensive research enterprise at a pediatric hospital.

    We also have many partnerships with the top research, biotech and health care organizations, and we work together to find innovative ways to improve kids’ health and treat life-threatening diseases.

    Hope for regenerating kidney cells

    Jordan Kreidberg, MD, PhD, director of Developmental Biology and Stem Cell Research in Children's Division of Nephrology, conducts research on kidney stem cells (the cells that turn into kidneys as the fetus develops) in an effort to find new treatments for conditions including:

    Kreidberg and his team have found the genes in these cells that tell the kidneys how to grow, and hope to use this information to grow new functional kidney cells to use in transplantation.

    Study sheds new light on focal segmental glomerulosclerosis (FSGS)

    Finding treatments for FSGS, a poorly understood condition that leads to end-stage renal disease, and in some cases, prevents the possibility of transplant, is recognized as one the great challenges in the field. A research team led by Elizabeth Brown, MD, of Children's Division of Nephrology, working in the laboratory of Martin Pollak, MD, of the Renal Division at Brigham and Women's Hospital, has identified an important gene associated with the disease.

    Other genes have been linked with FSGS, but they consider INF2 to be an important discovery. Mutations on this gene seem to affect larger numbers of families than those on previously discovered genes, and may be more relevant in understanding how the disease originates physiologically – which could lead to more effective treatment. 

    Our researchers are also involved in studies designed to improve post-transplant treatment for children with FSGS and familial HUS and slow the progression of chronic kidney disease.

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