Children’s kidney

Dear children, Dear parents, Dear interested persons, The kidneys have virtually the same function in children as they do in adults. However, there are certain differences and specific aspects that the kidneys have to cope with in childhood. For instance, good kidney function is very important for the body to grow normally.

….when things suddenly turn out differently …..

For affected children suffering from limited kidney function, their parents and their siblings, life will be different from what their healthy schoolmates experience, for example. There is a huge desire for everyday life to be as normal as possible and this normality is sometimes difficult to reconcile with the countless treatments and appointments.

There will be lots of issues and concerns, which can relate to medical matters but also to administrative and financial aspects. Educational issues sometimes arise or there may also be questions about accompanying siblings. We want to help make information quickly and easily available through this site, which is specifically aimed at children with kidney disease and those around them.

The Kidney Foundation does not offer a consultation service or provide medical details. Instead, please obtain this from the doctor who is treating you. A list of child nephrology centres is given below.  

Where can I find a hospital with a child nephrology department?

Swiss camp for children with kidney disease

The first holiday camp for children with kidney disease and their siblings took place over thirty years ago in Switzerland. Throughout that time the camp has been organised by the Department of Kidney Diseases of Zurich Children’s Hospital. This summer camp gives affected children and adolescents the opportunity to swap experiences with others, while allowing their families some respite for a week.​​

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Under Comments please enter: For Camp for children with kidney disease

We have financial worries!

I have a legal issue! How does application for invalidity insurance work?

Q & A (constantly being updated): 

New law as of 14 July 2021: The new Federal Act on the improvement of the compatibility of work and family care, which entered into force on 1 January 2021 and 1 July 2021, regulated the continued payment of wages during short absences from work and the paid 14-week leave to care for severely ill or injured children, expanded the care credits in old age and surviving dependents’ pensions (AHV) and amended the entitlement to the intensive care supplement and the attendance allowance under disability insurance to include children.

See: Federal act
Federal Act on the improvement of the compatibility of work and family care / BBl 2019 8667

See also information links

Q: How do we find out whether our child is insured under disability insurance or health insurance in view of their kidney disease
A: You will usually be informed by the doctor treating your child when an application for invalidity insurance is made. It depends on whether or not the kidney disease is a recognized birth defect under the terms of disability insurance.

Provision regarding birth defects

 

Q: How does application for invalidity insurance work?
A: Your doctor will usually tell you if you need to apply. You will receive an application form which you must complete and send back. The invalidity insurance scheme will then demand a doctor’s letter and decide whether or not it is a matter of a recognized birth defect. You, as parents, will then be notified directly of their decision by invalidity insurance. The formalities can sometimes take a long time but, as long as there has been no decision from invalidity insurance, treatment will be covered by health insurance.

 

Q: For how long will invalidity insurance cover the benefits?
A: Until the child has completed their 20th year (i.e. up to one day before their 21st birthday)

Image gallery

Everyday experience of dialysis in hospital

Copyright: Child Nephrology, Inselspital, Bern

What happens to the parents

What happens to the parents, siblings and those around them when a small person gets kidney disease?

What is happening to my sister, my brother? Why is he so poorly? Why can’t she play with me anymore? Why have my parents no time for me anymore? Is my brother/sister in pain?

Around 10 – 20 % of school age children and teenagers are affected by an impairment of their health or a chronic illness. Schools are committed to caring for every child appropriately in their day-to-day school life.

Various services are available, depending on the canton: 

School medical services – Information about care and support in everyday school life

Where can I get psychological support?

Transition - Crossover

When children grow up …… have you already wondered about the crossover from paediatric nephrology to adult nephrology? Your attending physicians* can discuss the subject with you and provide you with information.

Booklets from the Swiss Kidney Foundation

Literature

Geschwister chronisch kranker Kinder stärken. Das Programm “Stark und Fit mit Piet”.
Silke Seiffert.

ISBN:  978-3-8382-1058-2

Geschwister von chronisch kranken Kindern und Jugendlichen: Erleben und Bewältigungshandeln.
Christiane Knecht.

ISBN: 978-3-658-20995-7