Care For parents and families

A multi-disciplinary approach, with the input of specialists such as physiotherapists and occupational therapists, is often the best way to manage a musclewasting condition.

Having access to a multi-disciplinary team can ensure someone with a muscle-wasting condition receives a holistic approach to their care. This means that in a single visit to your specialist neuromuscular centre, you can get important input from each health professional involved in your child’s care.

This includes respiratory, cardiac, physiotherapy and occupational therapy health professionals who, together, can provide your child with better support.

Do we need to keep attending specialist appointments?

Muscle-wasting conditions are very rare. As most GPs may not see more than one or two patients with these conditions in their entire career, it is helpful to see professionals who have experience of muscle-wasting conditions.

They usually work at specialist clinics and, as experts in this field, they will discuss with you the right issues at the right times, and keep you up-to-date with any new developments, research and clinical trials. Specialist clinics also have established links with other services that may be of help to your child.

The relationship between a family affected by a musclewasting condition and the specialist team that supports you, is an important one. A strong relationship, based on good communication, helps to create a supportive environment and if there’s ever a difficulty, you and your child will be well-known to the team.

The relationship is also a partnership, so feel free to question why an appointment is necessary, or ask for less frequent appointments if you feel this is appropriate. Different families appreciate different levels of support and the team will be keen to get it right for you. Let them know your preferences.

Unless your specialist centre is very near to you and has a community remit, you will also need support from local paediatricians. They can help you get local services, such as physiotherapy, and can also contribute to a child’s EHCP or, in Scotland, Co-ordinated Support Plan.

Local paediatricians will play a role in your child’s care should he/she become unwell or be admitted to a local hospital. They work with the specialist team, GP and school health services to champion your child’s needs. If you can, space out the visits between the specialist centre and your local centre.

Why has our child been referred to other specialists?

As your child gets older, he/she will need additional support from doctors specialising in the care of joints and the spine (orthopaedic specialists), as well as breathing (respiratory specialists). A cardiologist will be involved in assessing the heart muscle function, and providing treatment if any weakness is found. In some cases, other specialists may also need to be consulted.

How much physical activity and exercise should my child do?

Keep your child as active as possible and try to make the activities fun. There is no need for anything excessive; normal play is fine. Allow your child to join in with PE and games, and they will judge for themselves if an activity is too challenging for them. Your child’s local physiotherapist can visit the school to advise on appropriate activities, including PE.

If appropriate, encourage walking. Your child may tire more quickly than their friends, so do make allowances 28 for this. Activities such as walking up hills, and/or climbing stairs, may be particularly difficult. If your child can manage them, swimming, cycling and horse riding are excellent physical activities.

Have conversations with your child’s school about playground safety, and the amount of activity your child can manage, and review this regularly.

What if our child falls over and breaks a leg?

It would be unwise to restrict your child’s activity because of fear of a broken bone, however the risks do need to be assessed. If your child does break a bone, ensure that staff at the hospital get in touch with staff at your child’s specialist muscle clinic. Contact the relevant professionals yourself too. Where possible, try to avoid having limbs immobilised (particularly in plaster casts) for long periods of time, as once muscle strength is lost, it is not easy to regain.

Alert cards and neuromuscular care plans

Muscular Dystrophy UK has produced a range of different alert cards for people with muscle-wasting conditions. Designed to fit easily into a wallet, the cards outline information about the condition, as well as key recommendations and precautions for consideration during medical emergencies.

Working alongside a range of specialist health professionals, Muscular Dystrophy UK has also developed a care plan that you can complete together with your neuromuscular clinicians. This care plan can then be shown to any health professional to develop a tailored approach to your child’s healthcare.

Order your alert card and care plan by emailing or call our Freephone helpline on 0800 652 6352.

Should our child follow a special diet?

There is no evidence to show that a child with a musclewasting condition requires a special diet, although some children do experience difficulty with feeding and gaining weight. If this is the case your child is likely to be referred to a speech and language therapist (SALT) and/or a dietician.

If there are no feeding difficulties, it is helpful to establish a healthy eating pattern, which maintains weight within a normal range. Excess weight makes it harder for a child with weak muscles to move. It also makes any moving and handling assistance more risky.

If your child becomes less physically active, they will require a lower calorie intake.

Muscular Dystrophy UK has a factsheet, entitled Healthy eating for children with neuromuscular conditions, which you may find helpful.

What are night splints?

As the name suggests, these are splints worn at night. When a joint cannot move through its full range, because of tightened muscles, this is known as a contracture. Night splints help to delay contractures because they hold the joint in a good position during the night. Splints are made from a variety of lightweight materials.

A child should, preferably, wear night splints throughout the night but some children find this uncomfortable. It 30 may be necessary to find a compromise, for example, wearing the splints on weeknights only, or for just half the night. Some children find it easier to wear just one splint at a time, on alternate nights. If it becomes very difficult, try persuading your child to wear them in the evenings while watching television.

Night splints can be uncomfortable in hot weather and wearing a cotton layer underneath them often helps. Sometimes the orthotist (someone who specialises in assessing for and supplying orthoses, such as supportive footwear or splints) will make air holes in the splint, which can help. It can also be difficult to turn over in bed when wearing splints. If night splints are uncomfortable, or your child grows out of them, contact your physiotherapist or orthotist.

Should our child have physiotherapy?

Most children with muscle-wasting conditions benefit from regular physiotherapy. A programme of exercises and stretching is likely to be suggested. Try to make these fun and part of the daily routine.

The team at your child’s muscle clinic will usually make a referral to the local physiotherapy service. If this does not happen, inform the muscle clinic staff or ask your GP for help.

Can alternative therapies help?

There is no scientific evidence of alternative therapies proving helpful. Some non-invasive therapies, such as massage, may be pleasant and relaxing, but do seek guidance from your specialist before undertaking any. Muscular Dystrophy UK has published a factsheet – Alternative therapies – that you may find useful to read. Speak to your GP if you’re unsure about any of these therapies for your child.