making muscle wasting history

For a child with Duchenne the primary school years are usually a time of significant change in terms of their independent mobility. When particular changes occur is a little variable but the pattern of change is generally predictable and allows for appropriate planning to take place. With a condition like Duchenne advance planning is essential. This ensures that you will have the things that you and your son are going to need available at the right time. With Duchenne, weakness is first noticed in the thigh muscles. Weakness here makes activities using these muscles difficult. Activities such as climbing stairs, walking uphill, getting up from the floor and running are affected. Poor balance combined with muscle weakness makes a child prone to falls. His knees may just “give way” without warning. Some children with Duchenne are never able to hop or balance on one leg. Children should be encouraged to remain physically active but you will need to recognize when your child is tired and needs to stop – this will occur more quickly than for another child his age. In Duchenne, muscle fibres break down and are replaced by fibrous and/or fatty tissue causing the muscle to gradually weaken and lose its “stretchiness”. It may also cause the muscle to look bulky. Some muscles weaken earlier than others, resulting in an imbalance of strength around the joints. These factors mean that joints stiffen and contractures (when a joint is no longer able to move through its complete range of movement) may develop. In a young child with Duchenne this is most frequently seen in the ankle joint. At some stage, due to a combination of tightness and weakness of the trunk, hip and knee muscles, your child will start to walk on tiptoes with his feet apart, his knees locked and his back arched. This method of walking is termed a “waddling gait”.
A GUIDE FOR 5 – 12 YEARS 5
As the weakness progresses (and the condition will always cause increasing weakness) mobility becomes more restricted and a child will tire more quickly. Falls will be more frequent and the use of a manual wheelchair may be required. Although initially weakness is seen in the legs, the arms are also affected. The pattern of weakness is known as proximal – more at the hips and shoulders than in the hands and feet. During the primary school years the muscles of the shoulder and upper arm weaken and children start to have more difficulty raising their arms above their head. Activities like pulling on a jumper or holding your hand up in class can be a struggle. The trunk muscles are weak so maintaining a good sitting posture is not easy. Advice on appropriate seating may need to be obtained from your physiotherapist or occupational therapist. Some children will develop a scoliosis (sideways curvature of the spine) but this is usually more of a problem after the ability to walk is lost. By the age of 12 many children with Duchenne will need to use a wheelchair all the time .A powered wheelchair is preferred to a manual as it offers a greater degree of independence. During the primary school years, a child’s heart and lung function should be monitored by the specialist neuromuscular team. Problems in these areas are, however, rare at this stage. If problems are discovered there are often things that can be done to help.
MAINTAINING MOBILITY
It is important to try to maintain a child’s mobility for as long as possible. Although he will eventually reach a point where mobility is lost there is much that can be done to prolong ambulation (walking). In a young child gentle encouragement to participate in physical activity is the order of the day. Keep activities fun. Swimming is especially good as it offers an all over body workout and can continue to be enjoyed even when other activities become difficult. Your child will also get a sense of achievement from learning to swim.

PHYSIOTHERAPY
Physiotherapy involves the physical treatment and management of a condition with the aim of maintaining maximum possible ability at every stage of the condition. Physiotherapy is important during the primary school years to help maintain independent movement for as long as possible and to prevent contractures from developing.All children with Duchenne should see a physiotherapist regularly and should be shown a daily programme of stretching exercises.These exercises are usually done once or twice a day (with the assistance of a parent or carer) for 10 to 15 minutes at a time. Sometimes these exercises can be done at school. A physiotherapist may also be able to offer hydrotherapy which involves a programme of exercises in a warm water swimming pool. If your child is not seeing a physiotherapist, speak to their consultant as a matter of urgency. Physiotherapy for children with Duchenne should be provided by the NHS, free of charge. The Muscular Dystrophy Campaign publishes a physiotherapy booklet for parents who have a child with Duchenne. This booklet should be used under the guidance of your physiotherapist who can tell you which exercises to concentrate on at each stage. The booklet is available free of charge from the Muscular Dystrophy Campaign.