Neuromuscular

Neuromuscular is the specialty that treats disorders that affect your muscles - resulting in weakness and problems such as getting up stairs or running quickly.  This may either be due to a problem affecting the muscle, the nerves that supply them, or the junction between the two.  

The Neuromuscular service sees babies, infants, children and teenagers with a wide variety of disorders. The disorders range in age of onset and severity and are usually inherited (genetic) conditions but in some cases they are acquired.

At Great Ormond Street Hospital (GOSH), physiotherapists are an important part of the Neuromuscular team.

Neuromuscular conditions can often affect function, walking, movement, strength and the child’s ability to play and develop. This is where a physiotherapist can help.

The neuromuscular physiotherapists assess and treat most of the children who are seen by the neuromuscular doctors. The assessment can help with diagnosis, identify problems and look at changes over time.

There are an increasing number of research physiotherapists who your child may see if they are part of a trial.

The aim of Physiotherapy is to maximise function, maintain independence, mobility and strength, prevent pain and encourage involvement in normal activity. The physiotherapist has an active role in monitoring changes and minimising secondary complications such as contractures and curvature of the spine (scoliosis). Assessments ensure any problems are anticipated or detected as early as possible.

Regular assessment is an important part of the overall management of children of all ages with neuromuscular disorders. Most of the children will be seen every 6-12 months depending on severity, rate of change, or sudden change, or due to unforeseen circumstances such as illness or following a fracture.

The majority of children are seen as outpatients. Physiotherapists may also be present in clinics to assess children alongside the Doctor. Occasionally children will be assessed on the wards at GOSH, either during treatment to assess effects, or to help determine a diagnosis. Some children may come for a period of rehabilitation. The physiotherapists work very closely with the multidisciplinary team (including the Doctors, Nurses, Dietician, Speech and Language Therapist, Social Workerand Family Therapist) giving a holistic approach to care.

Children are assessed by physiotherapists who are specifically trained and experienced in working with children who have neuromuscular conditions.

The assessment starts with the recording of:

• Concerns of parents: how the parents and child feel they have changed from previous review/clinic; deterioration, stability or improvement; pain, falls, discussion of home and school issues, including activities of daily living (ADL) and manual handling issues.
• Local physiotherapy, exercise – frequency and type; at home, school and clubs, stretching programmes/regimes.
• Other therapy: Occupational Therapy (OT), NHS/social services, speech, diet - other input.
• Mobility: walking ability: speed, distance, causes of stopping. Use of wheelchair/buggy for longer distances. Wheelchair mobility if walking is not possible. Type of wheelchair; with/without specialist seating.

Treatment programmes can include:

• Advice and education for parents, carers and patients
• Activity advice
• Strengthening exercises where appropriate
• Stretching exercises
• Hydrotherapy exercises in water
• Walking practice, gait re-education, overall mobility problems
• KAFO (knee ankle foot orthoses) rehab
• Splinting / Orthotics
  • Serial casting
  • Soft casting / splints
• Chest Physiotherapy, including breathing exercises and sputum clearance techniques
• Prevention and management of scoliosis
• Ensuring and maintaining good posture and seating,
• Mobility and wheelchair advice
• Advice on Orthotics

In addition, the physiotherapist will liaise with existing local physiotherapy services, provide specialist advice and make onward referrals where appropriate.

• Duchenne Muscular Dystrophy (DMD)
• Becker Muscular Dystrophy (BMD)
• Limb Girdle Muscular Dystrophy (LGMD)
• Spinal Muscular Atrophy (SMA)
• Peripheral Neuropathies such as Charcot Marie Tooth (CMT)
• Congenital Myopathy
• Congenital Muscular Dystrophies (CMD)
• Myasthsenia
• Neurogenic arthrogryposis
• Myotonoic dystrophies
• Other problems- mitochrondial, inflammatory, storage disorders

The neuromuscular team has considerable specialist experience in treating children with muscle disorders. We use a range of specialist techniques or can advise on their use locally, such a specific serial casting regimes relevant to weak children.

The team produces leaflets and information which they can give in the relevant circumstances.