Your Child & Chronic Kidney Disease

Your Child & Chronic Kidney Disease
An introductory guide for families
Acknowledgments
his booklet has been adapted from material provided by the Children & Young Peoples Kidney Unit at the City Hospital, Nottingham, England. The Kidney Foundation of Canada wishes to thank Dr. Alan Watson and other members of this Unit for their permission to adapt this material, as well as Jan Smith, who created the illustrations. Thanks are also extended to Dr. Julian Midgley, BM, BCh, FRCPCH at Alberta Childrens Hospital, Calgary, Alberta for his assistance in reviewing the information in this edition. This booklet was made possible by an educational grant from Ortho Biotech.
Contents
Introduction What do the kidneys do? What is chronic kidney disease? What causes chronic kidney disease? What is the treatment? An overview... What check-ups and tests will be needed? Diet and dietary supplements Medications Dialysis Transplantation Emotional health and well-being How your healthcare team can help Play and learning Your childs schooling Special events Financial help Are there any support groups? Where can I obtain more information? Useful telephone numbers Glossary
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YOUR CHILD & CHRONIC KIDNEY DISEASE
T H E K I D N E Y F O U N D AT I O N O F C A N A D A
Introduction
ou have recently learned that your child has chronic kidney disease. This condition used to be called chronic renal failure (these two terms mean the same thing). You probably have many questions about this condition and how it is treated. This booklet has been prepared to help answer some of those questions.
You will also learn how medications can help your child and why a proper diet is an important part of the treatment. You will discover ways you can help your childs emotional health and well-being, and about the services that are available to help you and your family. Finally, this booklet will tell you where you can obtain more information about chronic kidney disease. Some words used in the text appear in bold lettering and these are explained in the glossary at the back. Keep this booklet in a handy place so you can refer to it when you need to.
After you have read this booklet, you will know what the kidneys do and what chronic kidney disease means. You will learn about the many successful treatments that are used to manage this condition, especially dialysis and transplantation.
What do the kidneys do?

The kidneys are reddish brown organs about the size of their owners fists. They lie on either side of the back bone just behind the lower most ribs. Although most people are born with two kidneys, one normal kidney is more than enough to meet the bodys needs. Kidneys are important because they do three essential things. 1. Kidneys regulate the amount of water in the body. For the body to work properly, it must contain just the right amount of water. The kidneys remove excess water (water which is not needed) from the body, or hold on to water when the body needs more. 2. Kidneys remove waste products from the blood. One of the main jobs of the kidneys is to remove harmful waste products (which are produced by the normal function of other organs in the body) from the blood. When the kidneys filter the blood, these waste products are removed and eliminated from the body through the urine. 3. Kidneys produce important hormones. Hormones are chemicals which help to regulate certain body functions like blood pressure, the calcification of bones, and the production of red blood cells. Any water or food that is not required by the body, as well as waste produced by the function of the body, are excreted in the urine. The kidneys clean the blood using their millions of very small filters to remove the excess water and waste products twenty-four hours every day. The excess water and the waste products become urine, which is then eliminated by the body. The kidneys receive their blood supply from the main blood vessel of the body, called the aorta. About 25% of the blood pumped by the heart flows to the kidneys. The kidneys filter, or clean, the body's total blood volume every 5 minutes. The kidneys are attached to the bladder by thin tubes called ureters. There is also a tube which leads from the bladder to the outside of the body. This tube is called the urethra and urine leaves the body through the urethra. You can see these tubes and organs in the illustration.
What is chronic kidney disease?

Chronic kidney disease means that the kidneys are not able to work properly. This means that there is a slow build up of waste products, and sometimes fluid, in the body. This makes your child unwell. In children, chronic kidney disease can be helped by using certain medications. In later stages of chronic kidney disease, paying attention to his or her diet can also help. These types of treatments are called pre-dialysis treatments. During this stage, which may last for several years, your child will be carefully monitored to see how well the kidneys are working. When the kidneys are more severely affected and near the end of their function (less than 10% of normal) the stage of chronic kidney disease may be called end-stage renal disease (ESRD). At this stage, the build up of waste products increases to the point that your childs health is affected. Your child may become tired more easily, have nausea and vomiting and a decreased appetite. At this stage, other treatments like dialysis and/or kidney transplantation become necessary to replace kidney function. (Youll learn more about these treatments later.)
STAGES OF CHRONIC KIDNEY DISEASE

Stage Description 1 Kidney damage with normal or elevated GFR 2 Kidney damage with mildly decreased GFR 3 Moderately decreased GFR 4 Severely decreased GFR 5 Kidney failure GFR (ml /min /1.73m2 ) 90 or greater 60 to 89 30 to 59 15 to 29 < 15 or on dialysis
GFR = Glomerular Filtration Rate (a measure of the ability of the kidney to filter waste products). Children vary in size but their normal GFR, when corrected for body surface area (a measure of size), is about the same as an adult. An average adult has a surface area of about 1.73m2 thus a childs GFR is expressed as ml/min/1.73m2.
What causes chronic kidney disease?

There are many causes of chronic kidney disease; in fact, more than we can explain here. Some children are born with kidney disease or kidney problems. This means their condition is congenital. Other children develop kidney disease or kidney problems during their childhood years. This type is called acquired kidney disease. Your childs nephrologist (a doctor who is a kidney specialist) will discuss your childs specific condition with you.
What is the treatment?

An overview... The following is a general description of the treatment for chronic kidney disease. Of course, specific treatments may vary from child to child or from community to community. Please feel free to ask your childs healthcare team about any details of your childs treatment that you do not understand.
Treatment for chronic kidney disease is planned on a long-term basis for each child and usually involves three stages: pre-dialysis, dialysis, and transplantation. During all stages of your childs treatment, a proper diet and various medications will be required.
What check-ups and tests will be needed? After your child has been diagnosed with chronic kidney disease, he or she will need to have regular check-ups with the nephrologist and other members of the healthcare team. These professionals will need to perform various tests on your child to see how well the kidneys are working. Although many of these tests are quite simple, and often painless, you will probably want to prepare your child for the tests. Ask your healthcare team about resources like books, stories, play activities and teaching dolls that are available to help you prepare your child.
Some common tests Two common procedures are a urine test and a blood test. A sample of your childs urine is analyzed to see what is in it. Blood tests are used to determine the amount of waste products, such as creatinine, in the blood. If your child is very worried about blood tests (because of the needle), your healthcare team can help by applying an anaesthetic cream in advance so that needle pokes are less painful. Some special tests Sometimes your child may need to have more specialized tests and these may include: 1. Kidney biopsy: This test may be carried out if the healthcare team is not certain about the cause of the kidney disease. If a biopsy is necessary, then your childs doctor will fully explain the procedure to you.
2. Diagnostic imaging: When your child is found to have chronic kidney disease, he or she is likely to have several imaging tests to see how the kidneys are formed and function. Most of these tests are carried out on an out-patient basis (your child does not need to stay in the hospital). The most frequent type of diagnostic imaging test is an ultrasound examination and this does not involve any needles or tubes. Another common form of diagnostic imaging is X-rays used to look at your childs bones, usually the hands, wrists and knees, to see how the bones are growing. Other diagnostic imaging tests that might be needed include renal scans, cystograms and CT scans. If your child needs these tests, the healthcare team will give you more information about them.
Diet and dietary supplements

Why is diet important? All children need a well-balanced diet in order to grow and be healthy. Children with chronic kidney disease have special nutritional requirements. When the kidneys can no longer do their job well (especially in Stages 4 and 5 Chronic Kidney Disease), it is important to control the kinds and amounts of food your child eats. Every child has their own special needs depending on the type of treatment they are receiving. (Not to mention their own food likes and dislikes!) The renal dietitian, an important member of the healthcare team, will help you plan a healthy diet for your child.
This section provides some basic information on the specific food nutrients you may need to watch in your childs diet. If you have any questions, please feel free to ask the dietitian.
Protein Children need protein for growth and repair of the body and to help fight infections. Protein is found in foods such as meat, fish, poultry, eggs and milk. When the body digests protein, a waste product called urea is produced. The kidneys normally filter urea out of the blood and into the urine. However, when the kidneys do not work properly, urea and other waste products build up in the blood. This may make your child feel unwell. When your child is receiving pre-dialysis treatment, you may be advised to reduce the amount of protein in your childs diet. This will help to reduce the amount of urea which the body produces so less urea will build up in the blood. However, protein is very important for your childs growth, so your child must have enough protein to grow, but not too much. That is why you and the dietitian must carefully monitor how much protein your child is getting.
When your child is receiving dialysis treatment, the amount of protein needed in the diet will depend upon what type of dialysis treatment is chosen. (Youll learn more about the different types of dialysis treatment a little later.) After a successful kidney transplant, there is usually no need to restrict the amount of protein in the diet. Energy Energy is provided by foods which contain carbohydrates (sugars and starches) and fats. Carbohydrates can be found in foods like fruits and vegetables, bread, rice, pasta and cereals. Fats are foods like oil, butter, margarine and mayonnaise. It is very important that your child eats enough of these energy-giving foods so the body does not break down muscle or use protein for energy. Sometimes dietary energy supplements may be necessary.
Salt (sodium) The kidneys control the amount of salt (sodium) the body needs. When the kidneys are not working well, salt levels may build up in the body. This build up can cause thirst, puffiness or swelling (also called edema), and possibly high blood pressure (also called hypertension). To prevent this, you may be asked to reduce the amount of salt in your childs diet. You can do this by not adding salt to food at the table, and by eliminating salty foods, such as canned, prepackaged or fast foods, potato chips, ketchup, etc.
There are, however, some children who actually lose too much salt or sodium in their urine. If this is the case, then there is no restriction on the amount of salt your child can have. Sometimes your child may also need to take salt or sodium supplements. Your childs doctor and the dietitian will determine the correct amount of salt your child should have. Potassium Potassium is a mineral thats found in many foods. It helps the nerves and muscles to work. The kidneys control the amount of potassium in the blood. When the kidneys are not working well, the level of potassium in the blood may increase. Too much potassium in the body can be dangerous because it can harm the heart. Your child may have to limit foods which are high in potassium. The dietitian will be able to tell you what foods contain potassium and how much potassium your child can eat.
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Calcium and phosphate Calcium and phosphate are important for the growth of strong, healthy bones. In chronic kidney disease, the kidneys cannot remove enough phosphate from the blood and the levels can build up. This can cause itching skin, joint pain and weakened bones. Your child may have to limit the amount of high phosphorous foods. These include milk and dairy products, peanut butter, nuts and seeds, and dried peas and beans. Medication is sometimes given with meals to prevent the absorption of the phosphate from the digestive tract and so reduce the build up of too much phosphate in the body. Healthy kidneys produce a special form of Vitamin D that helps the body absorb calcium. Your childs doctor may prescribe a Vitamin D supplement that will help keep your childs calcium levels normal and prevent the bones from becoming weak.
Fluid The kidneys control fluid balance in the body. When the kidneys do not work well, it may be difficult for them to get rid of excess water. The amount of urine they make may decrease. The excess water stays in the body causing weight gain, puffiness or swelling, and a rise in blood pressure. If this happens, it may be necessary to reduce the amount of fluid that your child drinks. It is helpful to reduce the intake of salty foods because salt will make your child more thirsty. With some types of kidney disease however, the kidneys produce a large amount of dilute urine. This means that although there is a lot of urine, it does not contain the waste products which should normally be found in the urine. If this is the case, your child might need to drink lots of fluid. Check with your childs doctor and dietitian about how much liquid your child needs to drink. Vitamins and minerals A well-balanced diet normally provides enough vitamins and minerals to keep your child healthy. If your child is not eating well, your childs doctor and dietitian may prescribe a daily vitamin supplement. A supplement is necessary
if your child is on dialysis because some vitamins and minerals are lost during the dialysis treatment. Nutrition supplements Many children with chronic kidney disease have decreased appetites and they may develop a dislike for foods they used to love. They may feel tired, nauseous and generally unwell. They may not be able to eat enough food to meet their special needs to grow and be healthy. If this is the case, your childs doctor and dietitian may prescribe a special formula or milk shake. This will provide the extra nutrition your child needs. Be sure your child takes these formulas and milk shakes as prescribed, because they must be treated with the same importance as medications.
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Other methods of feeding Sometimes, if a childs appetite is very poor, he or she is not able to eat enough or drink the supplements. In this case, it may be necessary to consider tube feeding. There are two types of tube feeding. Nasogastric (NG tube) feeding uses a tube passed through the nose down into the stomach. Usually, this is only used as a temporary way of supplementing feeds. Gastrostomy (G tube) feeding uses a tube which is inserted directly into the stomach, through the skin below the ribs, on the left side of the tummy. This is done in the operating room and is usually used when there is a longer-term need for tube feeding.
Although it is often a big step for a family to agree to a G tube insertion, most often it is very helpful to the parents and child in helping to deal with chronic kidney disease. Growth failure One of the important problems that children with chronic kidney disease have is poor growth. This is caused by many factors. These include poor dietary intake, unhealthy bones or resistance to growth hormone. In some children with chronic kidney disease, the effect of normal amounts of growth hormone production is not enough to maintain normal growth. This may sometimes be treated with growth hormone injections.
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If tube feeding becomes necessary, members of your childs healthcare team will discuss this with you and your child. You can use this tube to feed your child the specially designed formula through the tube to meet his or her nutritional needs. NG or G tubes can also be used for medications and extra water if needed.
Medications Various medications are used in the treatment of chronic kidney disease. The type of medication will depend on the specific needs of your child. Your childs doctor and pharmacist will explain in detail about the medications your child will need to take.
Helpful hints about medications 1. Be sure you understand how the medication should be taken. This means knowing whether it should be taken on an empty stomach, after your child has eaten, at what times during the day, etc. 2. Feel free to ask what the medications are for and if they have any adverse effects. 3. Some medications are hard to obtain in some communities. Make sure you can get an adequate supply from your local pharmacy (sometimes the pharmacist may need to order certain drugs in advance or the pharmacist may have to talk to the hospital pharmacist to work out how to make a liquid medication for younger children).
4. You should keep an up-to-date list of all the medications your child is taking. This is very important in case of an emergency. Bring this list with you when you take your child to the doctor, hospital, etc. 5. Make sure that all doctors and dentists who are treating your child are aware of the medications your child is taking. 6. Do not allow your child to take any over-the-counter (non-prescription) medications for headaches or pain relief without being sure that it is okay for a child with chronic kidney disease. In general, there is only one recommended medication for these conditions: acetaminophen (for example, Tylenol). You should contact your childs nephrologist if other medications are ordered by another doctor. 7. Some families feel more secure if their child wears a MedicAlert bracelet at all times. These bracelets help in providing immediate identification of your childs medical conditions and medications. This information may be useful in emergency situations. To find out how you can obtain a MedicAlert bracelet, please contact your local office of The Kidney Foundation of Canada.
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Some types of medications 1. Anti-hypertensives (blood pressure pills). There are various types of medicines that help reduce blood pressure and because they work in different ways, sometimes two or more types may be used together to lower blood pressure. 2. Red blood cell stimulating agents (eg erythropoeitin). These medications, given by a needle, stimulate the bone marrow to produce red blood cells and so prevent anemia. 3. Phosphate binders (eg calcium carbonate or TumsTM). These medications are taken with meals to prevent phosphate from being absorbed from the digestive tract into the body (they bind phosphate in the intestines and it is passed out in the stool). 4. Vitamin D. A special activated form of Vitamin D that helps keep bones healthy. 5. Kidney multivitamin pills. A special combination of vitamins that are suitable for people living with kidney disease. Your childs nephrologist may prescribe some of the above medications as well as other types of medications. Your health care team will explain why each are needed as well as how they work.
Important warnings about medications 1. Children who are on dialysis, or who have had a kidney transplant, should never take medications, herbal products, nutritional supplements or home remedies that were not prescribed by their nephrology team. 2. Prescription medications must be taken exactly as directed. If the prescribed times are not convenient, discuss this with your childs doctor. 3. If your child is taking steroids, these must be taken exactly as directed by the doctor. If your child suddenly stops taking the steroids, he or she may have complications. 4. Many medications may not be safe for people with chronic kidney disease. This is because most medications are excreted from the body through the kidneys. 5. You should never allow your pharmacist to substitute another medication for the one your childs nephrologist has prescribed. The pharmacist must first consult your childs nephrologist. Teeth Good dental care is essential, so it is important to take your child for regular check-ups at the dentist. If your child needs any dental procedures, the dentist should first check with your childs nephrologist to see if antibiotics should be used.
Dialysis
An overview... When the kidneys can no longer remove enough of the waste products and excess water from the body, another way to do the work of the kidneys must be found. Dialysis is a treatment which can help do this until a kidney becomes available for a transplant. Dialysis is a process which cleans the blood, either by filtering it within the abdomen (peritoneal dialysis) or by passing it through an artificial kidney using a machine (hemodialysis). The type of dialysis chosen for your child will depend upon many different factors. These may include what treatments are available in your community and what is most appropriate for your childs own needs. Your childs healthcare team will discuss these factors with you in detail. Together you will choose the type of dialysis that is best for your child.
Peritoneal dialysis (PD) In peritoneal dialysis, the blood is cleaned inside the body. This is done using dialysis fluid, which contains sterile water, salts and glucose (sugar). Some dialysis fluid remains in the body all the time so the blood is being cleaned constantly. The fluid is exchanged at regular intervals, either by the parent, the child or by a machine. You will be able to carry out this process at home once you have been specially trained. Preparation for peritoneal dialysis To be able to have peritoneal dialysis, your child must first have an operation under general anesthetic. The purpose of the operation is to insert a soft tube (peritoneal dialysis catheter) into your childs abdomen. It is through this tube (PD catheter) that dialysis fluid flows into, and is drained out of, the body. Your child will have this tube as long as he or she needs this type of dialysis. The place where the catheter leaves the abdomen is called the exit site and this area may be covered by a small dressing or bandage. The catheter must always be secured to the skin on the outside of the abdomen at the exit site. After the scar from the operation has healed, it is not painful for your child to have the catheter, but it may take a bit of getting used to at first.
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How peritoneal dialysis works Peritoneal dialysis uses the bodys own natural membrane on the inside of the tummy called the peritoneal membrane. The peritoneal membrane lines the peritoneal cavity and acts like a filter. During peritoneal dialysis, dialysis fluid flows through the catheter tube and fills the peritoneal cavity. This fluid remains in the abdomen for a period of time. During this time, water and waste products move across the membrane from the blood into the dialysis fluid. This process is what is known as dialysis. After a certain amount of time, the dialysis fluid is drained out through the same catheter and is discarded. A fresh supply of dialysis fluid fills the abdomen and the process is repeated. This process may be repeated several times a day, or using a machine overnight.
How you can manage peritoneal dialysis at home Peritoneal dialysis can be done at home once you have received special training. There are two types of peritoneal dialysis: 1. Continuous ambulatory peritoneal dialysis (CAPD) 2. Continuous cycling peritoneal dialysis (CCPD)
Continuous ambulatory peritoneal dialysis (CAPD) In this method of dialysis, the dialysis fluid is exchanged between three and six times a day. This is usually done early in the morning, at noon, later in the afternoon and in the evening before bedtime. Your childs healthcare team will teach you how to connect a bag of dialysis fluid to the end of the PD catheter, allow the fluid to run into the peritoneal cavity, leave it there to do its work, and then drain it out again. This process is called an exchange.
Continuous cycling peritoneal dialysis (CCPD) This method of peritoneal dialysis is carried out at home overnight while your child sleeps. A machine (called an automatic cycler) carefully measures the amount of dialysis fluid which runs in and out of the abdomen during each cycle. (One cycle equals putting the fluid into the abdomen, allowing it to stay there to do its work, and then removing it.) Your childs nephrologist will decide how many cycles need to be performed each night. In the morning, the dialysis will be stopped and you will place a cap on the PD catheter. Some dialysis fluid may remain in the peritoneal cavity during the day. Any fluid left in will be drained out in the evening when your child begins the nighttime dialysis.
With both types of peritoneal dialysis, your child is free during the day to enjoy his or her normal activities, and to go to school (if your child is of school age). Do not be discouraged or worried about managing peritoneal dialysis at home. Your childs healthcare team will make sure you are very comfortable with the procedure before you are left to do it on your own. Help will always be just a phone call away.
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Hemodialysis (HD) Hemodialysis works using the same principle as peritoneal dialysis but the blood is cleaned outside the body using an artificial kidney machine. The machine is used to pump blood from your child to the artificial kidney, which is connected to the side of the machine. The dialysis process takes place inside the artificial kidney. The blood then flows back into your child's body. Only a small amount of blood is out of the body at any one time. Therefore, the blood must circulate through the machine many times before it is cleaned thoroughly. Each hemodialysis treatment usually takes between three to five hours and is repeated three or four times per week. It is usually done in the hospital.
There are different ways to establish access points. One form of access is called a central venous line (CVL) in which a special catheter is placed into the neck area. This involves surgically placing a catheter into one of the large veins in the neck and hiding it under the skin, so that only the end is exposed on the chest. The advantage of this type of catheter is that needles are not needed for hemodialysis or when taking blood samples. A second type of access is called a fistula. During the operation, an artery is connected to a vein, usually in the forearm, but sometimes in the thigh. When the artery and the vein are joined, the stronger blood flow from the artery causes the vein to become larger. Needles can be inserted into the enlarged vein to connect your child to the dialysis machine. A third way to provide access to the bloodstream is to make an internal graft. In this procedure an artery is connected to a vein with a short piece of special tubing placed under the skin. Needles can be inserted into this graft for the dialysis process. If hemodialysis becomes necessary for your child, the members of the healthcare team will discuss the types of access points with you in detail.
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Preparation for hemodialysis To be able to have hemodialysis, your child must first have an operation. The purpose of the operation is to establish an access point to your childs bloodstream. The access point is needed so that blood can be taken from, and given back to, your child during the hemodialysis process. The type of access used will depend upon your childs age and how long hemodialysis will be needed.
Transplantation
Why transplantation is the preferred treatment for children Dialysis is an effective treatment to help manage chronic kidney disease. However, it is usually only a short-term treatment until a kidney becomes available for your child. Sometimes children do not have dialysis at all, and go straight from pre-dialysis treatment to transplantation. However, many children require a period of time on dialysis prior to transplantation. After a kidney transplant, your childs growth and development are usually better. That is why transplantation is the preferred treatment for children.
What types of kidney transplants are possible? There are two types of kidney transplants: a living donor transplant and a deceased donor transplant. In both cases, the donor must have a compatible blood group and tissue type with your child. In a living donor transplant, one kidney may be donated by a family member. This means that a close relative, often a parent, offers one of their kidneys for transplantation. If you, or someone in your family, wishes to be considered as a possible donor, then you should discuss this with your childs healthcare team.
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A deceased donor transplant is a transplant from a non-living donor. In this type of transplant, a healthy kidney from someone who has died suddenly is used for transplantation. The family of the donor must consent to organ donation. You will not be told the identity of the donor. Donors are well-screened for serious infectious diseases. If your child is waiting for a deceased donor kidney transplant, he or she will be put on a waiting list in a centralized computer system. The amount of time your child will have to wait for a deceased donor kidney transplant will depend upon many factors. These factors include the number of kidneys available for transplantation, and how closely your childs tissue type matches a kidney that does become available.
The kidney transplant operation The following information will give you a short overview of the kidney transplant operation. If your child is being considered for a transplant, the healthcare team will provide you with more details on the operation itself and the care your child will need while recovering. All the members of the healthcare team recognize that this can be a stressful time for you and your child. They will make every effort to help you by being there to explain things and to answer your questions. At all times, they will try to keep your child free of pain and discomfort.
Note: Sometimes a blood transfusion may be needed during the transplant operation. All blood is carefully screened, but if blood transfusions concern you, please discuss this with your childs healthcare team.
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Transplant surgery takes between two and six hours. During the operation, the new kidney and ureter (the tube through which the urine flows into the bladder) are put in the lower abdomen near the groin, and are attached to your child's blood vessels and bladder. A temporary tube (catheter) is placed in the bladder for a few days to drain the urine made by the new kidney. Sometimes the new kidney may not work immediately, so your child may need to have dialysis until it does. Your child will receive fluids and medications through special intravenous lines, usually inserted in the arm and neck. After the transplant operation, your child will usually need to spend some time in the intensive care unit or a special care ward. This is because your child will need to be closely monitored to see how the new kidney is working.
Follow-up care For quite a while after the transplant operation, your child will need to have frequent and regular blood tests, and other scans and procedures. These tests are all intended to monitor how well the new kidney is working. Several medications will be required every day to stop the body from rejecting the new kidney. Before your child goes home after a successful transplant, the healthcare team will fully discuss your childs follow-up treatment. This will include the importance of medications, what signs of rejection to watch for, appropriate diet and exercise, and the schedule of follow-up visits to the hospital. Although a kidney transplant provides a high quality of life, it is not a cure for kidney disease. The child who receives a kidney transplant must take medications, see health professionals and have routine tests for the rest of their life.
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Emotional health and well-being

How your healthcare team can help Any illness within the family can cause many different feelings, including confusion, anger, fear and sadness. Children with chronic kidney disease and their families often need special understanding and support. It can be very difficult to lead a normal life while coping with dialysis and transplantation. Your family may have to make changes in your schedule and lifestyle. There may be worries about your childs school attendance, diet and hospital visits.
It is very important for you to remember that you are not alone in managing your childs care. You have the full support of your childs healthcare team. This team is usually made up of many people, each with a different role. You will probably meet doctors and nurses with different specialties. You will also come into contact with renal social workers, dietitians, child life specialists, transplant coordinators, pharmacy staff and various technicians. All of these people are dedicated to helping you and your child.
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It is worth noting that the renal social workers particular role is to prepare and support you, your child and your family throughout all the stages of chronic kidney disease treatment. It is important for you to have regular contact with the renal social worker. This will give you an opportunity to ask questions, and discuss any worries which may be upsetting you and your family. The clinical nurse specialist will also help you and your child to better understand your childs condition, and the changes which may be required in your familys lifestyle.
Play and learning For many children, especially younger ones, play is an important way of reducing anxiety about hospitalization and treatments. When medical procedures and tests are explained through play, they become less frightening for the children. Many hospitals have child life specialists and specially trained nurses who will explain the procedures and tests. Sometimes special teaching dolls are used to help prepare children for procedures such as dialysis and transplantation.
Many hospitals have special playrooms where these play and learning activities take place. These are safe areas where children are temporarily free of needles and doctors. Some hospitals provide special areas for teenagers where they can enjoy their own activities with stereos, videos, etc.
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Your childs schooling The healthcare team will be able to tell you about what services are available to help your child keep up-to-date with their school work. This can be helpful, especially if your child must spend a lot of time in the hospital, or when your child is on hemodialysis. If your
child is able to attend school, it is a good idea to make sure your childs teachers have some understanding of your childs care. Members of your childs healthcare team will tell you how this can be arranged with your childs school.
Financial help The renal social worker can advise you about provincial healthcare benefits that may be available because of your childs illness and treatment. He or she will work with you to see if your family meets the criteria for financial assistance from the provincial government or other organizations such as The Kidney Foundation of Canada. Special events Your child should be encouraged to take an active part in regular family activities and events such as picnics, parties and get-togethers with friends or at school. If you have any questions about a particular event, activity level, diet, or travel plans, feel free to consult the members of your childs healthcare team.
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Are there any support groups?

The Kidney Foundation of Canada offers a wide range of support services for people with kidney disease. It is best to consult your local Foundation office to find out what services are available in your area.
Where can I obtain more information?

This booklet has probably not answered all your questions. The best sources to provide you with more information about chronic kidney disease, and about living with kidney disease, are the members of your childs healthcare team and The Kidney Foundation of Canada. There are many educational booklets available simply by calling The Kidney Foundation. Or, if you have access to the Internet/World Wide Web, you can visit The Kidney Foundations web site at www.kidney.ca.
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Useful telephone numbers

Family Doctor
Pediatrician
Pediatric Nephrologist
Dietitian
Social Worker
Clinic Nurse
Pharmacist
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Child Life Specialist
Local Kidney Foundation Office
Other
Glossary
Antibiotic A medication used to combat a bacterial infection. Aorta The main artery of the body carrying blood directly out of the heart. Artery Blood vessel carrying blood away from the heart. Part of the circulatory system. Artificial kidney Used in hemodialysis to filter waste products and excess fluid from the bloodstream. Artificial kidney machine (hemodialysis machine) A machine which pumps blood out of and back into a person and monitors the function of the artificial kidney. Bladder The sac in which urine produced by the kidneys is collected and stored until it is released from the body. Blood pressure The pulsating pressure exerted by the blood against the walls of the arteries. The reason for blood flow through an artery. Calcification The process by which calcium salts accumulate in tissues. This is a normal process for growing bones to make them strong and healthy. Calcium A mineral that is important for bone growth and body function.
YOUR CHILD & CHRONIC KIDNEY DISEASE T H E K I D N E Y F O U N D AT I O N O F C A N A D A
CAPD Continuous Ambulatory Peritoneal Dialysis. See also Peritoneal Dialysis. Catheter Hollow tube used to transport fluid to and from the body. CCPD Continuous Cycling Peritoneal Dialysis. See also Peritoneal Dialysis. Chronic kidney disease (CKD) A reduction in kidney function, that usually occurs over months or years, and results in the build-up of waste products in the body. Chronic renal failure (CRF) Same as chronic kidney disease that is now the preferred term. Congenital A medical condition or disease that one is born with. Creatinine A waste product in the blood produced by the normal function of muscles. The kidneys remove creatinine from the bloodstream. Chronic kidney disease causes an elevated creatinine. CT scan (Computerized Tomography) A diagnostic imaging test in which a CT scanner takes X-ray pictures and then assembles them into a cross-sectional image.
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Central venous line (CVL) A method of establishing access to the bloodstream to conduct hemodialysis. Commonly called a hemodialysis (HD) catheter. Cystogram Diagnostic imaging test to provide information about the shape, size and function of the bladder. A small catheter is placed where urine comes out (urethra) and is slipped up into the bladder. Fluid (Dye) is then placed into the bladder, the catheter is removed and pictures are taken. This study can be done with nuclear medicine or X-rays, depending on what information is needed. Diagnostic imaging Tests, such as ultrasound and X-rays, that produce pictures of parts or organs of the body, which are used to assess the structure and function of various organs, bones, etc. to help make diagnoses. Dialysis Process of removing waste products and excess water from the bloodstream. Dialysis catheter Silicon rubber tube placed in the peritoneal cavity for peritoneal dialysis. Dialysis fluid Special fluid used in dialysis into which wastes are passed. Edema (swelling) An abnormal accumulation of fluid in the tissues, especially noticeable around the ankles, face (particularly the eyelids), and sometimes the abdomen.
End-stage renal disease (ESRD) Stage 5 of chronic kidney disease that usually requires dialysis or transplantation to maintain life and health. Fistula Created surgically by joining an artery and a vein. The vein then matures or dilates and provides an access to supply and return blood during dialysis. Gastrostomy (G tube) Feeding tube or button inserted through the skin of the abdomen directly into the stomach to feed the child. Graft Created surgically by joining an artery and vein with a special material to provide access to the bloodstream for hemodialysis. Hemodialysis The process by which excess body wastes and fluid are removed from the blood when passing through an artificial kidney. Hypertension Persistently high blood pressure taking into account the child's gender, age and height. Kidney One of the two fist-sized organs located at the back of the peritoneal (abdominal) cavity on each side of the spinal column.
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Kidney biopsy Removal of a tiny piece of kidney tissue for special examination under a microscope. Often done using ultrasound to guide the biopsy needle to the kidney. Nasogastric (NG tube) Feeding tube passed through the nose into the stomach. Nephrologist Doctor who is a kidney specialist. Peritoneal cavity Space in the abdomen, lined by peritoneum, where peritoneal dialysis occurs. Peritoneal dialysis The process by which excess body wastes and fluid are removed from the blood using the bodys peritoneal cavity. Peritoneal membrane (peritoneum) A porous membrane lining the peritoneal cavity, through which water and waste products pass during peritoneal dialysis. Phosphate A mineral important for bone growth and body function. In chronic renal disease there is a build-up of phosphate in the body. Potassium A mineral necessary to the body, but harmful when found in excess.
Pre-dialysis treatment Treatment in the early stages of chronic kidney disease using medications and special attention to diet. Rejection A vigorous response by the bodys own immune system to try and destroy a kidney transplant. Renal Referring to the kidney. Renal scan A diagnostic imaging test which uses a camera to assess different aspects of kidney function. This is performed by injecting a very small amount of radioactive medicine into a vein. The camera follows the movement of the medicine through the kidneys and bladder. The dose of radiation is much less than from one chest X-ray. Sodium (salt) A mineral which helps regulate the fluid content in the body. Transplantation A healthy kidney from a donor is transplanted into the body. Ultrasound A painless procedure which shows the size and structure of the kidneys. Urea The waste product in blood which is produced from protein breakdown.
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Ureter The natural tube in the body which carries urine from each kidney to the bladder. Urethra The natural tube for the discharge of urine from the bladder. Vein A blood vessel which carries blood back to the heart from other parts of the body.
Vitamins Essential substances needed for proper body function. X-rays A type of diagnostic imaging test often used to look at bones, the heart and lungs.
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The Kidney Foundation

OUR VISION Kidney health, and improved lives for all people affected by kidney disease. OUR MISSION The Kidney Foundation of Canada is the national volunteer organization committed to reducing the burden of kidney disease through:

funding and stimulating innovative research; providing education and support; promoting access to high quality healthcare; and increasing public awareness and commitment to advancing kidney health and organ donation.
Since 1964, our fundraising campaigns have allowed us to contribute millions of dollars to research, and to provide services to individuals living with chronic kidney disease and related conditions. For further information, or if you wish to help us in our efforts, please contact The Kidney Foundation of Canada office in your area. You can also visit our Web site at www.kidney.ca.
2007

Your Child & Chronic Kidney Disease

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Your Child & Chronic Kidney Disease

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Your Child & Chronic Kidney Disease

An introductory guide for families

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

What do the kidneys do?

YOUR CHILD & CHRONIC KIDNEY DISEASE

What is chronic kidney disease?

STAGES OF CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

What causes chronic kidney disease?

YOUR CHILD & CHRONIC KIDNEY DISEASE

What is the treatment?

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

Diet and dietary supplements

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

Emotional health and well-being

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

Are there any support groups?

Where can I obtain more information?

YOUR CHILD & CHRONIC KIDNEY DISEASE

Useful telephone numbers

Child Life Specialist

Local Kidney Foundation Office

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

YOUR CHILD & CHRONIC KIDNEY DISEASE

The Kidney Foundation

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