Muscular Dystrophy is the term used to denote a group of neuromuscular diseases that affect a significant number of children in the UK. It predominantly affects boys causing muscle weakness, loss of ability to walk and impairing overall function. There are several types of muscular dystrophy with the most common being Duchenne's (which affects only boys) and physiotherapy is a key component of managing the effects of muscular dystrophy and maximising quality of life for children affected.
Diagnosis is through the use of clinical examination and medical tests designed to look for evidence of muscle damage. Due to the varied number of types of muscular dystrophy age of diagnosis is extremely wide; some forms of muscular dystrophy such as Duchenne's, Becker's and spinal muscular atrophy will be identified from a very early age whereas other forms such as oculopharyngeal will not present till 40 years of age! This article will focus mainly on the effects of the most common form of Muscular Dystrophy: Duchenne's.
Duchenne's Muscular Dystrophy affects children from birth and approximately 100 children every year are born with this condition in the UK. It is progressive in nature, meaning that its effects tend to worsen as children age. Symptoms usually become evident after the age of 3 years and it tends to affect the lower limbs first by causing a progressive loss of strength and reduction in mobility. Braces and crutches to aid walking will be common in children under 10 years and at some point (usually by age 12-13) it is likely that a child with Duchenne's Muscular Dystrophy will require a wheel chair. Initially symptoms may be slight and may only include a higher likelihood of falling, poor balance and becoming fatigued more quickly than their peers. As the condition progresses they may start to toe walk (due to increased calf muscle tone and as a compensation for problems at the knees). The upper limbs are affected later on in the condition but often respiratory and cardiac weakness will develop. Physiotherapy is extremely important for any child affected with Muscular Dystrophy and aims to maintain muscle length, prevent contractures, prevent respiratory complications, improve strength and maintain function.
How can ThreeSpires Physiotherapy help my child with Muscular Dystrophy?
Our paediatric specialist has significant experience of helping children with all forms of Muscular Dystrophy and of all ages and difficulties. After booking an initial assessment the physiotherapist will visit you and your child at home. In general, we recommend that the first appointment takes place at home to make your child comfortable, facilitate a discussion and also to enable our physiotherapist to assess the methods by which therapy can occur at home. Follow up sessions may be at home, school or nursery as required. Below is a description of a typical initial assessment:
Subjective - initially there is a discussion between yourself, the physiotherapist and (dependant on age) your child. This will cover a wide range of areas including medical history, difficulties, possible goals and anything that may be important to you and your child.
Objective - here the physiotherapist will conduct a through physical assessment and examine how your child is able to move, their balance, strength and overall ability. Our paediatric physiotherapist is able to make this a fun and relaxed process and children will often not be aware that it is an assessment.
Treatment - during the session your child and physiotherapist will practice various movements, work on strengthening, balance and the physio may also stretch some of your child's limbs (such as ankles or knees) to improve or maintain muscle length. This is always conducted in an entertaining and fun manner in order to maximise engagement and benefit of each session. Your physiotherapist will also discuss and demonstrate ways in which you can help with rehabilitation and exercises at home.
At the end of the initial assessment session your physiotherapist will discuss with you how best to proceed and will talk through an overall plan in terms of number of sessions needed, how often sessions should be, what it is important to work on and initial goals for physiotherapy.
They will also discuss where it is best to conduct each session, generally some sessions will be at home and some will be at school. Your physiotherapist (with your permission) will be able to liaise with school, the GP, your surgeon and any other staff involved in the care of your child and can provide a report if required.