The writer would appreciate
KEY POINTS
* It is more common in adults and the elderly but significant numbers of children too are affected.
* There is relentless progression of long-term kidney dysfunction ultimately leading to renal failure.
* There are several major complications associated with chronic kidney disease and end stage kidney disease.
* There are several modes of treatment which includes medicines, dialysis and transplantation.
* Even with such long drawn out modalities of treatment, the child has to be treated holistically.
Dr. B. J. C. Perera
MBBS(Ceylon), DCH(Ceylon), DCH(England), MD(Paediatrics), FRCP(Edinburgh), FRCP(London), FRCPCH(United Kingdom), FSLCPaed, FCCP, FCGP(Sri Lanka) Consultant Paediatrician
In the worldwide general population, slightly more than 30 people in every 100,000 develop chronic kidney failure each year. In the paediatric population, up to the international age limit of 18 years, the annual rate is only about 1 or 2 new cases for every 100,000 children. In other words, adults are about 15 to 30 times more likely to develop kidney failure than children. The risk increases progressively and steadily with age.
Chronic kidney disease (CKD) is characterized by an irreversible and relentless deterioration of the functional capacity of the kidneys that gradually progresses to end-stage renal disease (ESRD). Chronic kidney disease has emerged as a serious public health problem in recent times. Data from many countries show that incidence of kidney failure is rising among adults and is commonly associated with poor outcomes and high cost. In the past decade, the incidence of the chronic kidney disease in children too has steadily increased, with poor and ethnic minority children being disproportionately affected in the Western countries.
About 70 per cent of children with chronic kidney disease develop ESRD by age 20 years. Chronic kidney disease is not symptomatic in its earliest stages although laboratory urine examination findings or blood pressure may be abnormal. The kidneys have a tremendous reserve capacity and at least two thirds of this reserve has to be destroyed before major symptoms appear. As chronic kidney disease progresses to more advanced stages, signs and symptoms greatly increase. These include increasing thirst with larger than normal amounts of urine being passed due to the inability of the failing kidneys to concentrate urine together with other features such as retention of acidic excretory products with the production of a general acidic state in the blood, disturbances in the chemical composition of the body and particularly in the blood, anaemia, high blood pressure, marked gastrointestinal effects characterised by loss of appetite, nausea and vomiting and certain bone problems which occur directly as a result of the kidney failure. There can also be marked growth failure due mainly to a multiplicity of adverse effects of chronic renal failure.
The major health consequences of chronic kidney disease include not only progression to kidney failure but also an increased risk of cardiovascular disease. Evidence-based clinical practice guidelines support early recognition and treatment of chronic kidney disease related complications to improve growth and development and, ultimately, the quality of life in children with this chronic condition. Appropriate paediatric care early on in a number of paediatric kidney diseases may reduce the prevalence of this complex and expensive condition.
Unfortunately, several of the conditions that lead to chronic kidney failure in children cannot be easily fixed. Often, the condition will develop so slowly that it goes unnoticed until the kidneys have been permanently damaged. The entire process is progressive but the rate of progression varies widely. Treatment may slow down the progression of some diseases but in many cases the child will eventually need active and aggressive forms of treatment.
There are many underlying causes of chronic kidney failure in children. These include :-
* Birth defects. Some babies are born without kidneys or with abnormally formed kidneys. The kidney abnormality is sometimes a part of a syndrome that affects many other parts of the body as well.
* Blocked urine flow and reflux. If blockage develops between the kidneys and the opening where urine leaves the body, the urine can back up with a concomitant increase in pressure and damage the kidney. In reflux, the urine tends to go backwards up to the kidney when the bladder contracts during urination. The back-pressure thus exerted together with the increased susceptibility to urinary infections makes this a potent cause for chronic kidney damage.
* Hereditary diseases. In one such condition known as polycystic kidney disease (PKD), children inherit defective genes that cause the kidneys to develop many cysts which are sacs of fluid that replace healthy tissue and keep the kidneys from doing their job. In some such as Alport syndrome, the defective gene that causes kidney disease may also cause hearing or vision loss.
* Glomerular diseases. Some diseases attack the individual filtering units in the kidney. These filtering units are known as glomeruli. When damaged, these glomeruli, leak blood and protein into the urine. If the damage to the glomeruli is severe, kidney failure may develop.
* Systemic diseases. Diabetes and other general diseases can affect many parts of the body, including the kidneys in some people. In a disease called Systemic Lupus Erythematosus, the immune system becomes overactive and attacks the body’s own tissues. Diabetes leads to high levels of blood glucose that damage the glomeruli. Diabetes is the leading cause of kidney failure in adults. In children, however, diabetes is low on the list of causes because it usually takes many years of high blood glucose for the kidney disease of diabetes to develop. However, an increasing number of children have type 2 diabetes which is a condition that is usually associated with adults. As a result, we may see more children with chronic kidney failure caused by diabetes in the future.
From birth to age 4 years, birth defects and hereditary diseases are by far the leading causes of kidney failure. Between ages 5 and 14 years, hereditary diseases continue to be the most common causes, followed closely by glomerular diseases. In the 15- to 19-year-old age group, glomerular diseases are the leading cause and hereditary diseases become rarer.
Parents of children who are diagnosed with a chronic kidney disease have many questions about what might happen next, how their child might fee, and what treatments are likely to be involved. Four major areas of concern are blood pressure, diet, anaemia and growth. These children may feel sick at times, need to take medicines and watch what they eat and drink. They may need regular hospitalisations as well.
Treatment begins with diet modification and medicines. In the case of growing children, the trend now is to institute the minimal possible dietary restrictions so that adequate growth is facilitated. Dietary protein restriction used to be the rule of thumb a couple of decades ago in the belief that proteins, following their utilisation in the body, are the major source of the excretory products. However, such drastic measures led to marked deterioration in growth and a very poor quality of life. Currently a reasonably normal diet is used unless the severity of the renal failure dictates several forms of restrictions on certain articles in the diet.
The child may need to take several medicines, including vitamins, calcium, bicarbonate, and blood pressure pills. As a result, medication management can be a major challenge. In the developed world, if a child has difficulty remembering to take medications, they could consider getting a medicine clock. This device has two cardboard clocks, one for each 12-hour period, with a picture of the medicines posted on the times they need to be taken. These clocks can provide valuable cues for children who need to take several doses of different medicines throughout the day and evening. Also, other types of alarm watches, such as special wrist watches, can be set to remind them to take their medicine. If a child has to take a lot of medicines, it may affect his or her appetite. The doctors need to try and find the most acceptable forms of medicine such as smaller pills, capsules or more concentrated liquids and simplify the medication schedule.
Newer injectable medicines are available for treatment of anemia and growth failure in some of them with chronic kidney disease. Erythropoetin can increase the red blood cell count and circulating haemoglobin level which often improves energy and activity levels in children with kidney failure. Recent studies have shown that many of them with chronic kidney disease will also benefit from the administration of human growth hormone injections, to facilitate normal growth.
Children with chronic kidney failure may not have any symptoms until about 80 per cent of their kidney function is lost. Then, they may feel tired, have nausea or vomiting, have difficulty concentrating or experience confusion. Accumulated fluid appears as swelling in the skin, fluid congestion in the lungs, and they may have high blood pressure. At this stage, two treatment options are available. These are dialysis and transplantation.
Nearly all children with end-stage kidney disease would eventually need kidney transplants. However, this modality of treatment is not developed to the extent that one would like to see or to the necessary degree to cater to all those children who need transplantation. For some of the children with such severe kidney failure for whom transplantation is not possible for various reasons, the only alternative is dialysis therapy.
The two forms of dialysis that are available are hemodialysis and peritoneal dialysis. In hemodialysis, blood is cleansed outside the body through a machine. All these treatments can take 4 hours at a time and need to be performed two to three times a week. In general, diet restrictions are less strict with peritoneal dialysis, and children tend to grow better. Both types of dialysis, but particularly hemodialysis, may require that diet be limited with regard to fluids, phosphorus and salt intake.
Haemodialysis uses a machine that carries the child’s blood through a tube to a dialyzer, a canister that contains thousands of fibres that filter out the wastes and extra fluid. The cleaned blood is then returned to the child through a different tube. Hemodialysis is usually performed in a clinic under the supervision of a nurse and kidney specialist. It is generally required three times a week for about 3 to 4 hours each time.
Peritoneal dialysis uses the body's own peritoneal membrane which is beneath the outer layers of the abdominal wall to filter the blood. A catheter placed in the child’s belly and it is used to pour a solution containing specific amounts of sugar and salts into the abdominal cavity. While the solution is there, it pulls wastes and extra fluid from the blood. Later, the solution is drained from the belly, along with the wastes and extra fluid. The cavity is then refilled, and the cleaning process continues. Peritoneal dialysis can be performed in the home, usually while the child sleeps, without a health professional being present. It requires fewer dietary and fluid restrictions and offers more lifestyle flexibility. Two forms of peritoneal dialysis are available. One is continuous cycling peritoneal dialysis (CCPD) and the other is continuous ambulatory peritoneal dialysis (CAPD). CCPD uses a simple machine to perform the dialysis at night while CAPD is done throughout the day. CCPD requires the assistance of a parent and is most suitable for younger children while CAPD is performed by the patient himself or herself and may be more suitable for older children and teenagers.
Transplantation provides the closest thing to a cure for kidney failure. In this procedure, a surgeon places a healthy kidney in the child’s body. The kidney may come either from a living donor or from someone who has just died. As for a living donor, most people can donate a kidney without hurting their health. Many children receive a kidney from one of their parents. However, the donor does not have to be a family member. In the case of a deceased donor, this is the case when there is no suitable living donor, a child with ESKD may be placed on a waiting list to receive a kidney from someone who has just died.
People who have transplants must take drugs to keep the body’s immune system from rejecting the new organ. These immunosuppressive drugs can help maintain good function in the transplanted kidney for many years. However, they may have some undesirable side effects such as making a child vulnerable to infections.
Such sophisticated programmes for treating childhood renal failure are in place in most developed countries. However, most unfortunately, chronic dialysis therapy and transplantation programmes are not all that well developed in our country. As medicine advances in our land, comprehensive programmes with central registry facilities should be instituted for chronic kidney disease patients.
Exercise will help a child with ESKD to perspire to get rid of excess fluid and flush out toxins through the skin. Parents should 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. Beyond these physical measures, they should be encouraged to express their feelings. Those whose health is stable should be encouraged to participate as fully as possible in school and extra-curricular activities which would 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. As these children with chronic kidney diseases get older, they can take on more responsibility for their own care. School-age children should know the names of their medicines and how and when they are to be taken. As they are making the transition to adulthood, teenagers can share in the responsibility of making appointments too. Adolescents and teenagers should also have time alone to speak with the doctor and other members of the health care team. A big step for them is being able to talk to others, such as teachers, coaches and friends, about their condition. Teenagers especially do not 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.
Children with chronic kidney disease might also have problems dealing with the side effects of medicines. For those taking steroids for long periods of time, these effects can be significant, including weight gain, especially around the face and trunk, moodiness, sleep disturbances, cataracts and weakening of bones. Long-term treatment with these medications also can slow growth and delay pubertal maturation. Long-term prednisone treatment can also lead to or aggravation of acne in teenagers. 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, such children with long standing kidney problems with renal failure go through all of the trials and tribulations of growing up as experienced by all children. The child or adolescent has to be treated holistically first and this includes establishing standards of behaviour as well. Sometimes, those standards have to be relaxed or suspended during particularly difficult times. The real trick is helping them to pick them up again once the child’s health has improved.
Please e-mail him at bjcp@ymail.com
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