Kidney & Urinary System

Parents of kids who are diagnosed with a chronic kidney disease have many questions about what might happen next, how their child might feel, and what treatments are likely to be involved.

Four major areas of concern are blood pressure, diet, anemia (low red blood cell count), and growth. Kids may feel sick at times, need to take medicines, and watch what they eat and drink.

Read on to learn about treatments for kidney disease and what parents can do to help.

Treating Kidney Diseases

Treatment begins with dietary changes and medicines. Your child may need to take several medicines, including vitamins, calcium, bicarbonate, and blood pressure pills. So, medication management can be a major challenge.

If your child has trouble remembering to take medicines, consider getting a medicine clock, which has two cardboard clocks — one for each 12-hour period — with a picture of the medicines posted on the the times they need to be taken. These clocks can provide valuable cues for kids who need to take several doses of different medicines throughout the day and evening. Also, alarms can be set to remind kids to take their medicine.

If your child must take so much medicine that it affects his or her appetite, call your doctor for advice. Try to find the most acceptable forms of medicine (smaller pills, capsules, or more concentrated liquids, for example) and simplify the schedule under your doctor’s guidance.

Injectable medicines are available for treatment of anemia and growth failure in some kids with chronic kidney disease. Erythropoetin can increase the red blood cell count, which often improves energy and activity levels in kids with kidney failure. Many kids with chronic kidney disease will grow more normally with the help of human growth hormone injections.

Children with chronic kidney failure may not have any symptoms until about 80% of their kidney function is lost. Then, they may feel tired, have nausea or vomiting, have difficulty concentrating, or feel confused. Fluid build-up appears as swelling in the skin, fluid congestion in the lungs, and high blood pressure. At this stage, two treatment options are available — dialysis and transplant.

Dialysis

Nearly all kids with end-stage kidney disease eventually receive transplants. If a living related donor can’t be found, dialysis may be required until a donor kidney becomes available.

The two forms of dialysis are hemodialysis and peritoneal dialysis:

1. In hemodialysis, blood is cleansed outside the body through a machine. These treatments take several hours at a time and usually need to be done three or more times a week. In most cases, hemodialysis is done in a dialysis center, but in some cases it can be done at home.
2. Peritoneal dialysis uses the body’s own peritoneal membrane — beneath the outer layers of the abdominal wall — to filter the blood. Two forms of peritoneal dialysis are available: continuous cycling peritoneal dialysis (CCPD) and continuous ambulatory peritoneal dialysis (CAPD). CCPD uses a simple machine called a cycler to perform the dialysis at night; CAPD is done throughout the day and no machine is needed. CCPD requires the assistance of a parent and is most suitable for younger children; CAPD is performed by the patient and may be more suitable for older kids and teens.

Both types of dialysis, but particularly hemodialysis, require dietary limits with regard to fluids, phosphorus, and salt. With fewer dietary and fluid restrictions, peritoneal dialysis can mean more lifestyle flexibility, and children tend to grow better.

Helping Your Child

Kids with chronic kidney disease often need dietary changes. Making sure that they get enough calories and nutrients can be a challenge. Supplementing your child’s diet with extra carbohydrates and fats might help to increase calorie intake.

The kidneys cannot easily remove excess water, salt, or potassium, so their intake might need to be limited. Dairy products have to be restricted because they contain lots of phosphorus. Too much phosphorus may lead to calcium deposits in the eyes, heart, skin, and joints and may leach calcium from bones, which can increase the risk of broken bones.

But eliminating dairy foods can make it hard for kids to get enough calcium to maintain bones and support other body functions, particularly those affecting growth.

In kids with more severe kidney failure, reducing the intake of dairy products and other protein-rich foods (such as meat, fish, or eggs) can make the filtering work of the kidneys easier and can sometimes delay the need for dialysis. But it’s important to remember that kids do need enough protein for growth — so strict protein restriction (the kind recommended for adult patients) should not be used.

You’ll also need to monitor fluid intake. If your child’s ability to produce urine is declining, fluid intake needs to be limited. Stay away from “super-size” drinks, and offer slushy beverages or ice cubes to suck on.

Sodium

Some kids with kidney disease, particularly those with high blood pressure, may need to restrict their intake of sodium, which is found in table salt and many foods. Be careful of salt substitutes, too. Many have potassium in them, which can cause problems for kids with kidney failure. Some other salt preparations (for example, “natural salts,” Himalayan salts, etc.) are just as high in sodium chloride as common table salt.

Read food labels and talk to your doctor or a dietitian about the sodium content of various foods. Consult your nephrologist about an appropriate diet that meets your child’s need for calories and nutrients while minimizing damage to kidneys and avoiding other complications.

Exercise

Exercise will help your child sweat, which will get rid of excess fluid and flush out toxins through the skin. Keep TV and video games to a minimum and encourage physical activity instead. Walking and strength training make bones stronger and stimulate muscles and nerves that can help ease “restless leg syndrome” and other nervous system problems sometimes associated with kidney disease.

Emotions

Beyond these physical concerns, kids should be encouraged to express their feelings. Try to find well-adjusted young adults who had chronic kidney disease during childhood to talk with you and your child. You may find contacts and support groups through your nephrologist or the National Kidney Foundation. It’s important for kids to see that the symptoms of the disease can be managed and controlled and that they can live a full life.

Kids whose health is stable should be encouraged to participate as fully as possible in school and activities, which will help them develop their self-esteem.

During hemodialysis treatments, doing homework, reading, and working on art projects are some positive ways to spend the time.

Looking Ahead

As kids with chronic kidney diseases get older, they can take on more responsibility for their own care. School-age kids should know the names of their medicines and how and when they’re taken. As they’re making the transition to adulthood, teens can share in the responsibility of making appointments. Teens should also have time alone to speak with the doctor and other members of the health care team.

A big step for kids is being able to talk to others — such as teachers, coaches, and friends — about their condition. Teens especially don’t want to stand out or seem different. Part of the process of learning and maturing will be identifying limitations and knowing when to ask for help.

Kids with chronic kidney disease might also have problems dealing with the side effects of medicines. For those taking prednisone for long periods of time, these effects can be significant, including weight gain (especially around the face and trunk), moodiness, sleep disturbances, cataracts, and osteoporosis (weakening of the bones). Long-term treatment with these medicines also can slow growth and delay pubertal maturation.

Long-term prednisone treatment can cause acne (or make it worse) in teens. To an adolescent dealing with body image, a clear complexion might be just as important as controlling the kidney disease.

Besides the stress of having a chronic illness, your child is going through the trials of growing up, just like other kids. Treat him or her as a child first, which includes setting rules about behavior. Sometimes, those standards can be relaxed during particularly difficult times; the trick is picking them up again after your child’s health improves.

Keep the lines of communication open so everyone knows what’s happening and never hesitate to ask for help from your doctor or a mental health professional if you think it might be needed.

Being told that your child needs a kidney transplant may leave you feeling scared, angry, or confused. You might not fully understand why your child needs a new organ or where it will come from. Just thinking about the months ahead may fill you with dread and worry.

But, fortunately, most kidney transplants are successful. Many kids who undergo these procedures go on to live normal, healthy lives once they recover from surgery.

In the long term, kids need to take medicines to help prevent complications and have regular checkups to monitor their new kidney function.

About the Kidneys

Kidneys are bean-shaped organs located near the middle of the back, just below the ribs. Most people have one kidney on either side of their backbones. Kidneys help to clean the blood by removing things like excess fluids, salts, and waste products from the blood. Kidneys also release hormones that help regulate blood pressure, create new red blood cells, and maintain calcium levels for healthy bones.

Each day, nearly 425 gallons (1,609 liters) of blood pass through a person’s kidneys. Inside each kidney are about a million tiny structures called nephrons that sift the blood and remove about 2 quarts (1.9 liters) of fluids and waste products. The fluid and waste is turned into urine and stored in the bladder to be released when someone urinates (pees).

If the kidneys stop working properly, harmful waste products and excess fluid build up in the body. Blood pressure may also rise and the body might not make enough red blood cells. This is called kidney failure. If left untreated, it can quickly become life-threatening.

Causes of Kidney Failure

Diabetes and high blood pressure are the most common causes of kidney failure in adults. But in young people, it’s usually the result of:

• Genetic diseases. Conditions that run in the family can affect the kidneys. One example is polycystic kidney disease, in which normal kidney tissue is replaced by fluid-filled sacs.
• Glomerular diseases. These conditions damage the tiny filtering units in the kidneys (called glomeruli).
• Birth defects. Defects of the kidneys or urinary tract can prevent the kidneys from working normally.

Treating the condition that’s causing the kidney failure can sometimes help heal the kidneys. But this isn’t possible if a person has lost more than 15% of his or her kidney function. When this happens, doctors would recommend either:

• a kidney transplant, which places a new (donor) kidney in the body
• dialysis, a therapeutic process that does the work of the kidneys by artificially cleaning the blood

For children who are good candidates for transplant surgery, it can be the better option. Since dialysis treatments are usually needed daily or multiple times a week, they can interfere with a child’s routine and make attending school or traveling difficult. Successful kidney transplants may make it easier for kids to live as they did before developing kidney failure.

Different Types of Kidney Transplants

There are two kinds of kidney transplants: a living-donor transplant and a non-living-donor transplant. The difference between the two is based on who donates the new kidney.

As the name suggests, a living-donor transplant is when a child gets a kidney from someone who is still alive. One healthy kidney can do the work of two failed kidneys, so, unlike some other organs, a kidney can be donated by a live donor. A living donor is usually a relative or close friend of the transplant recipient. In some cases, however, a kidney can come from a stranger who just wanted to help someone else.

A non-living-donor transplant happens when someone who was an organ donor has died and his or her kidneys are used for transplantation. This kind of transplant requires children in need of a new kidney to put their name on a waiting list until a suitable donor kidney is located.

Preparing for a Kidney Transplant

If the doctor thinks your child should have a kidney transplant, you will first go to a transplant hospital to find out if he or she is a good candidate for the procedure. The health care team there will do an extensive medical evaluation to see if your child is healthy enough to have surgery and tolerate the medicines that will have to be taken for life.

If a transplant is a good choice for your child, a donor kidney will be needed. In some cases, donor kidneys come from a close relative or friend who has the same blood and tissue types and whose organs are similar in size to the child’s. If a living donor can’t be found, your child’s name will be added to a waiting list until a suitable kidney from a non-living donor is found.

Organ Waiting List

A group called the United Network for Organ Sharing (UNOS) oversees the organ list and determines who gets the organs that are donated. They do this based on a score that represents how sick someone is and how quickly the person needs a new kidney.

Organs are also assigned based on who is the best match for the organ donated (for instance, the organ is the right size for the person’s body and the donor has the same blood type as the recipient).

As you wait for a kidney, help your child stay as healthy as possible. This will help improve your child’s quality of life and ensure that he or she is ready for transplant surgery when the time comes. Make sure your child eats a healthy diet, gets regular exercise, and takes all medicines as directed. And get to all medical appointments on time, especially if your child is undergoing dialysis.

Let the doctor and the transplant center know right away if there are any changes in your child’s health, and make sure they know how to reach you at a moment’s notice. When a kidney is located, it will be important to move quickly, so keep your child’s hospital bag packed and ready to go.

Your child may have to wait to find a kidney that is a good match. Unfortunately, no one knows how long that wait will be. It could be just a few days or it could be years.

Waiting is hard, so consider finding a support group of parents whose kids have had transplants or are waiting for transplants. To find a local group, talk to your doctor or the social worker at the hospital or check online.

Transplant Surgery

When a suitable donor kidney is found, your child will go to the transplant hospital for the surgery. There, a blood sample will be taken for something called an antibody cross-match test. This determines whether your child’s immune system will accept the new kidney. If the test comes back negative, the kidney is acceptable and the transplant can begin.

In the operating room, your child will be given general anesthesia to sleep through the procedure. The surgeon will then make a small cut, or incision, in the lower part of your child’s abdomen, just above the hips. The new kidney will be placed in the abdomen, and the surgeon will attach the kidney’s blood vessels to blood vessels in the lower body. The new kidney’s ureter tubes (tubes that carry urine) will be connected to the bladder.

In most cases, children’s failed kidneys are left in place and aren’t removed unless they are causing complications such as high blood pressure or an infection. Kidney transplant surgery usually takes about 3 to 4 hours to complete, and the new kidney often will start working right away, though it could take a few weeks.

Recovery

After kidney transplant surgery, your child will spend a few days or up to a week in the hospital. During this time, the health care team will monitor him or her closely to make sure there are no complications from the surgery, such as bleeding or infection.

A person’s immune system is programmed to sense foreign objects, such as bacteria, and help the body get rid of them. Unfortunately, your child’s immune system will recognize a new kidney as a foreign object and will attempt to reject it. To keep this from happening, your child will need to take medicines called immunosuppressants. Immunosuppressants can make your child vulnerable to infections (especially in the days immediately after surgery), so be sure to keep your child away from sick people and have everyone at home wash their hands often.

For the first few weeks after surgery, your child will need frequent checkups to make sure the recovery is going smoothly. If your child develops a fever or soreness in the area of the transplant, tell a doctor immediately. These could be signs that the body is rejecting the new kidney. If the new kidney is rejected or fails, your child can go back on dialysis or undergo another transplant if he or she is still a good candidate.

With modern advances in surgical techniques and immunosuppressant medications, the overall success rate of kidney transplants is very high. So there’s a great chance your child will be able to get back to doing nearly everything he or she enjoyed before. Just make sure your child eases back into activities and avoids rough contact sports that can damage the transplanted kidney. If you have questions about whether a certain activity or sport is a good idea, ask your doctor before you let your child participate.

Eating well, exercising when the doctor says it’s OK, and getting enough rest will help to keep the new kidney healthy.

Dealing With Feelings

Having a chronic condition is hard enough for a child to deal with. But when you add the stresses and lifestyle changes associated with dialysis, surgery, and immunosuppressant therapy, it can be overwhelming. Talk to your child about these changes and how you will work them into your routine, and find time to do fun things together with family and friends.

For teens, having to take immunosuppressants after surgery can be an added stressor. That’s because these medications can lead to increased acne, weight gain, and hirsutism (excess facial and body hair in women). In fact, this is a major reason that teens are more likely than others to not take their medications. This can be very dangerous and lead to the new kidney being rejected. So it’s vital for parents to communicate the importance of taking all medicines as directed.

Be there for your child to talk about how he or she is feeling. If you think your child needs additional support, make an appointment for him or her to talk to a therapist or counselor. Support groups are another great way to help your child relieve stress while connecting with others who are going through similar challenges.

Most parents can’t think of anything more frightening than being told their child has cancer. Fortunately, most kids with Wilms tumor, a rare kidney cancer, survive and go on to live normal, healthy lives due to the highly treatable nature of the disease.

Also known as nephroblastoma, Wilms tumor can affect both kidneys ― but usually develops in just one. Doctors believe that the tumor begins to grow as a fetus develops in the womb, with some cells that are destined to form into the kidneys malfunctioning and forming a tumor.

Signs and Symptoms

Before being diagnosed with Wilms tumor, most children do not show any signs of having cancer, and usually act and play normally. Often, a parent may discover a firm, smooth lump in the child’s abdomen. It is not uncommon for the mass to grow quite large before it is discovered ― the average Wilms tumor is 1 pound at diagnosis.

Some children also may have nausea, stomach pain, high blood pressure (hypertension), blood in the urine, loss of appetite, or fever.

Even though Wilms tumors often are large when found, most have not spread to other areas of the body. This makes it easier to successfully treat than if the cancer cells have spread (metastasized) to other parts of the body.

Diagnosis

Several tests are used to confirm a Wilms tumor diagnosis and determine the stage of the disease. Tests that might be used include:

• Ultrasonography (ultrasound or US), usually the first tool used to diagnose the condition, uses sound waves instead of X-rays to generate an image of the area doctors wish to view.
• Computed tomography (CT or CAT scan) produces a detailed cross-sectional view of an organ through X-rays. It is extremely useful in detecting tumors and determining whether cancer has spread to other areas.
• Magnetic resonance imaging (MRI) uses radio waves and strong magnets to produce detailed pictures of the internal parts of the body. This provides more intricate images that allow doctors to see if the cancer has invaded any major blood vessels near the kidney.
• X-rays are used to look for any metastasized areas, especially in the lungs.
• Bone scans use small amounts of radioactive material to highlight areas of diseased bone, if any exist.
• Laboratory tests such as blood tests and urinalysis check the general health of a patient and to detect any adverse side effects (such as low red or white blood cell counts) of the treatment.

The chance of Wilms tumor being hereditary (“running in the family”) is so rare that there is no test to screen those who may pass the disease onto their offspring. However, certain genetic factors like birth defect syndromes can increase the likelihood of developing the disease. Those with a family history or personal history of Beckwith-Wiedemann syndrome (a condition associated with larger-than-normal internal organs), WAGR (marked by defects of the iris, kidneys, urinary tract, or genitalia), or Denys-Drash syndrome (a defect of the genitalia) are at risk.

Kids with risk factors for Wilms tumor should be screened for the disease through an ultrasound every 3 months until about age 6 or 7. Those at high risk may get undergo screening until they’re a little older.

Treatment

Treatment is determined by many factors, the most important being the stage of the cancer at diagnosis, and the condition, or histology, of the cancer cells when observed under a microscope. “Favorable” histology is associated with a good chance of a cure; tumors with “unfavorable” histology are more aggressive and difficult to cure. About 95% of Wilms tumors have favorable histology.

Doctors use a staging system to describe the extent of a metastasized tumor. It is extremely useful in determining prognosis (possibility for a cure) and the best course of treatment. For example, a child with very aggressive disease should be given an intensive regimen of medication to achieve the best chance for a cure. A child with less-invasive disease should be given the least amount needed to reduce long-term side effects from toxicity.

The stages are:

• Stage I: Cancer is found in one kidney only and can be completely removed by surgery. About 41% of all Wilms tumors are stage I.
• Stage II: Cancer has spread beyond the kidney to the surrounding area, but can be completely removed by surgery. About 23% are stage II.
• Stage III: Cancer has not spread beyond the abdomen, but cannot be completely removed by surgery. About 23% are stage III.
• Stage IV: Cancer has spread to distant parts of the body; most commonly, the lungs, liver, bone, and/or brain. About 10% are stage IV.
• Stage V: Cancer is found in both kidneys at diagnosis (also called bilateral tumors). About 5% are stage V.

Surgery is most often used to treat Wilms tumor. For stages I through IV, a radical nephrectomy ― removal of the cancer along with the entire kidney, ureter (tube that carries urine from the kidney to the bladder), adrenal gland (hormone-producing gland that sits on top of the kidney), and surrounding fatty tissue ― is done.

Since stage V patients have cancer involvement in both kidneys, removing both kidneys would result in kidney failure and the need for a kidney transplant. As a result, surgeons usually take out as much of the cancer as possible and preserve as much healthy kidney tissue as they can to avoid an organ transplant.

Regardless of the stage and histology, all treatment plans usually include both surgery and chemotherapy, and the more advanced stages also may require radiation therapy. Chemotherapy uses drugs (administered either orally or intravenously) to enter the bloodstream, circulate throughout the body, and kill cancerous cells wherever they may be. Radiation uses high-energy X-ray beams to kill specific cells in different areas of the body.

Both treatments have short-term and long-term risks. Temporary or short-term discomfort may include nausea and vomiting, loss of appetite, mouth sores, fatigue, loss of hair, weakened immune system (leaving a patient vulnerable to infection), and bleeding or bruising.

Long-term effects may include the development of secondary cancers (like leukemia) or the weakening of some internal organs, such as the heart. However, these risks are minimal ― the benefits of treatment far outweighs potential risks.

Caring for Your Child

As much as parents long to have their child out of the hospital, they often feel unsure of whether they can provide appropriate care after their child comes home. The doctors, nurses, and home health services should provide all the information and support needed to help a parent care for a child between hospital visits.

Depending on the treatment regimen (and a child’s general health and the doctor’s recommendations), appropriate at-home care can vary. Treatment for most children with Wilms tumor is not as intensive as treatment for other cancers (except for more advanced stages) so most kids won’t have tremendous restrictions on them.

Most kids undergoing treatment for Wilms don’t have special nutritional requirements or need medication for low blood cell counts, as most other cancer patients do. However, parents must watch for signs of distress, like fever, nausea, vomiting, or diarrhea. A child with a high fever should see a doctor right away.

Once a child is finished with therapy, the care team will provide a schedule of follow-up tests. Chest X-rays or CT scans may be taken every several months. Stage and histology of the cancer will determine the ultrasound schedule. Blood work and a physical exam may be required to check for adverse effects of the treatment.

For kids who relapse (the cancer returns), prognosis and treatment depend on their prior therapy, the cancer’s histology, and how long it’s been since the last treatment. The longer it’s been, the better. There are few late recurrences of Wilms tumor, so remaining cancer-free for at least 2 years after treatment is generally a very good sign.