Development For parents and families

What does the diagnosis mean for our child’s development?

What physical changes can we expect to see in our child?

Any physical changes in your child are likely to be subtle rather than sudden or dramatic. In very young children, as they go through normal development, you may initially see positive progress.

However, if your child is walking, it is common for him/ her to tire more quickly when walking longer distances, to complain of pain in legs after exercise, to struggle with stairs or to fall frequently. A child may struggle more at the end of the day, particularly if they have been doing physical activities.

Sometimes, weakening of the arms or hands may occur. Writing for long periods, or taking clothing off or putting it on over the head may become more difficult.

If your child is not able to walk at all, changes may take place in their posture or joint position, owing to weakness in some muscle groups.

While it is good to encourage your child to be as active as possible, your child needs to know you understand that some activities are not easy. It is helpful to balance periods of activity with periods of quieter play to avoid exhaustion.

Will our child be in pain as a result of having a muscle-wasting condition?

Most muscle-wasting conditions themselves do not cause pain; however some children may be troubled by muscle cramps or joint pains. Advice and regular monitoring by a physiotherapist will be beneficial for most children.

Physiotherapists are likely to provide a programme of stretches and exercises to maintain a good range of movement in the joints, which will reduce discomfort. Gentle massage and warmth can help relieve cramps.

Will our child develop eyesight, hearing or speech difficulties?

Most muscle-wasting conditions do not cause difficulties with eyesight or hearing. Weakness of facial muscles, which may affect speech, chewing and the ability to swallow, are not usually a problem in childhood.

Will our child become incontinent?

This is very unlikely. Sensation usually remains normal and children will be aware of when they need to use the toilet.

Of course, accidents can happen if a child delays going to the toilet and is then a little slow to get there. If your child does have difficulties, tell your consultant, care advisor or GP, as they will suggest adjustments if necessary.

Constipation can be a problem in some children, particularly if they are not physically active. It can usually be managed by adjustments to the diet. Again, discuss this with your GP, consultant or specialist nurse.

Will our child have learning difficulties?

Some children with muscle-wasting conditions may also have learning difficulties. If learning difficulties are present, they will not be progressive and with the right input, good educational progress can be made.

Ensure your child is properly assessed by an educational psychologist and discuss whether or not your child needs an Education Health and Care Plan (EHCP) or, in Scotland, a Co-ordinated Support Plan.