Principles of treatment
Introduction
It is devastating to discover your child has arthritis, and it gets worse when you discover how much ‘treatment’ you will be asked to do at home. It can be difficult for professionals to really understand what this feels like, especially when they work with kids with arthritis all the time, and have seen the most ill and most affected children. For you, it’s your child, and your first encounter with childhood arthritis.
Parents experience a whole range of feelings including anger, helplessness, depression and frustration. These feelings are entirely normal, and very common, but we tend not to tell each other! Parents should not be left feeling helpless, powerless and overwhelmed. The truth is that the parents are the key to how the child meets the twin challenges of arthritis and treatment. There are ways of equipping yourself to meet these challenges. This book is one way and there are more important resources in your wider family, friends, and local community. Some people may let you down but others will become your heroes.
Principles of treatment
Childhood arthritis is managed through a combination of medicines and daily exercises. The main principles for the whole healthcare team and family are to:
Manage pain
Maintain joint function and posture to prevent deformity
Maintain normal social, psychological and educational development
Closely monitor and manage complications
Sometimes other modes of treatment are used as well, and a wide variety of healthcare professionals become involved. For everyone, there needs to be a balance between what seems important today and what is best for the child in the longer term. For example, it may seem kinder to let the child rest today, but we know that if the child rests too much her joints will slowly cease to work, causing considerably more pain and problems in the future.
What about real life?
The reality is that this is a long term, mostly painful condition requiring complex daily treatment, and there is no cure. Experienced specialists know that the majority of children outlive active arthritis, and that the quality of life the person achieves will depend upon:
- how severe the disease was,
- how quickly the child got effective treatment,
- how the individual child coped with the challenge of arthritis,
- the daily effort of her family, especially her parents, to fit a complex programme of exercises, splinting, and medicines into family life in the long term,
- and the ability of the parents, especially the mother, to secure supportive services to meet the needs of the family.
There is little choice about the first item, and sometimes there seems little choice about the remaining four. However, a considerable amount can be achieved when the parents become informed about arthritis, treatment options, ways of supporting the children, how to conduct the exercise and splinting options at home, and how to reach services that could help the family. That is the task of this handbook.
