Is only child syndrome real 2

Nephrotic syndrome in children

The illness

The kidneys work like a sieve or filter. They filter out pollutants and retain valuable substances for the body. In nephrotic syndrome, the sieve is leaky and valuable substances such as proteins get into the urine. Thus there is a lack of proteins in the blood. Since the proteins in the blood normally hold the water, more water now gets into other tissues. This water retention can become noticeable as swelling. The technical term is Edema.  

At the idiopathic nephrotic syndrome (short: iNS) around 250 children fall ill in Germany every year. Mostly children between 1 and 10 years are affected. Idiopathic means that the cause is unclear. But we know that the body's own defense system plays a role in this.

Signs and complaints

Typical signs are:

  • Edema especially on the face (eyelids), legs and feet and in the genital area (scrotum or labia)

  • dark colored and foamy urine

  • too few proteins (Proteins) in blood

  • increased levels of fat in the blood

Other symptoms may occur, such as nausea, tiredness or high blood pressure. In addition, the children are prone to infections because they lack proteins that would otherwise fight off pathogens. The loss of water in the blood makes it easier for vessels to become clogged. The risk of blood clots (Thrombosis) is increased.

If left untreated, the kidneys can be so badly damaged that they fail completely (Kidney failure). If left untreated, the accumulation of fluid can also become dangerous, for example in the lungs.

The iNS occurs in spurts. That means there are times when there are no complaints and times when symptoms appear. The typical iNS usually disappears when the affected person grows up.


The doctor will question you and your child in detail and give them a physical examination. Your child's urine and blood will be tested in the laboratory and the kidneys will be examined using ultrasound.

The doctor will also check whether your child has the iNS or whether there is a certain cause of the nephrotic syndrome, for example a hereditary disease or inflammation of the blood vessels, which can lead to nephrotic syndrome.

Experts only recommend tissue removal from the kidney in certain situations, for example if the medication is not working or the child is older than 10 years at the onset of the disease.

The treatment

When the iNS appears for the first time, experts recommend drugs that act like cortisone. In the technical language they are called Glucocorticoids. These suppress the body's own defense system. In this way, relapses of the disease and permanent kidney damage are to be avoided. These cortisone-like drugs are effective in around 9 out of 10 affected children.

If the disease occurs for the first time, experts currently recommend the cortisone-like active ingredient Prednisone to be taken over a period of 12 weeks. Studies indicate that relapses are less common after 12 weeks of treatment than after 8 weeks of treatment. According to current studies, it is unclear whether an even longer duration of treatment can prevent more relapses.

According to experts, affected children should take the prednisone once a day in the morning for the first 6 weeks. For a further 6 weeks, the drug is only used every other day. The dose depends on the size and weight of the child.

Despite treatment, about 3 out of 4 affected children will relapse. Experts speak of one Relapse. Many have repeated relapses. Then you take the prednisone for a shorter period of time than the first time. As a rule, the remedy works well again, allowing the kidneys to recover. The aim is to keep the side effects of the medication to a minimum, such as growth disorders, bone loss, weight gain, clouding of the lens of the eyes or high blood pressure.

It becomes difficult when the prednisone does not work or no longer works. Affected people often need repeatedly or permanently additional medication that suppresses the body's own defenses (Immunosuppressants).

Very rarely it can happen that the kidneys stop working permanently. Kidney weakness develops (Renal insufficiency). Then treatments are required that do the work of the kidneys - in technical jargon they are called: Kidney Replacement Therapies. This includes blood washing (dialysis) and the Kidney transplant

Close collaboration between parents and a pediatric team specializing in kidney diseases (Children's Nephrology), can usually avoid permanent consequences of the disease and damage caused by the medication. Regular check-ups in a nephrological practice or outpatient clinic are also recommended in adulthood.

What you can do yourself

  • Your child does not need to be physically sparing, it can do everything like other children. Even during an episode, your child does not need bed rest.

  • Your child should be given a low-salt diet during an attack. It is best to discuss the amount you drink with the medical team.

  • In order to detect a relapse in good time, you should check your child's urine for protein with a test strip in the morning.

  • Vaccinations protect against certain infections. However, they can trigger a relapse of the iNS. Let us advise you on this topic.

  • With support, everyday life is easier to cope with. If necessary, you can receive psychosocial support as a family.

  • Find out about self-help organizations and share your experiences with other people affected, for example at group meetings.

May 2021, published by the German Medical Association and the National Association of Statutory Health Insurance Physicians