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Physiotherapy for childhood myasthenia

Myasthenia – A neuromuscular disease

Like all other neuromuscular diseases, myasthenia can present with a number of symptoms that can vary in severity.  The severity of these symptoms will affect the level of impact on normal everyday functional tasks, from getting up in the morning to participating in normal activities at school and in leisure time.  Some symptoms can be severe enough to cause serious and even life threatening illness.

The most common symptoms associated with neuromuscular diseases are:

muscle weakness
fatigue (tiredness)
joint contractures (stiff joints)
altered postures (such as curves of the spine)

These symptoms can in turn lead to problems with mobility (walking, running or even just moving in bed), functional difficulties (problems with the tasks, activities and jobs of everyday life) and in the very serious cases, effects on the respiratory system (getting oxygen to the vital organs of the body).

Aims of physiotherapy

The aim of all physiotherapy, for children and adults, whether it is in neuromuscular disease, sport injury, acute medicine or rehabilitation, is to maximise the functional ability of the person being assessed or treated and to prevent onset of associated illnesses.  This is done by looking at the presenting symptoms, the impact of possible disease progression and external factors such as medication, equipment and other therapies.  Short and long term goals should be set and treatment plans devised to help achieve the set goals.

Every treatment plan should always be tailor made for the person being treated and not for the condition.  Similarly, goals will be different for each person depending on their individual circumstances – age, severity of symptoms, functional needs etc, and these should be reviewed regularly.

Importance of physiotherapy

Frequent physiotherapy input can help to identify any changes or problems early on and this is especially relevant in children.  The physical impact of development and growing will affect the symptoms of neuromuscular diseases.  For example, young children will need very different muscle strength and control when they progress from crawling to walking and then again when they learn to run.  If changes in symptoms, or physical problems, are not quickly identified, further, more serious problems could develop.

Input from a physiotherapist is important as physiotherapists are expert at liaising with other health professionals in order to manage a child’s care correctly.  Often, the frequency of physiotherapy input means that the physiotherapist may have a better professional awareness and relationship with the child than other healthcare professionals involved.

Difficulties with myasthenia and physiotherapy

The main problem facing physiotherapists is that there is not a ‘normal’ set of symptoms or problems affecting children with myasthenia.  Every child is different, not only from other children with the condition but potentially from themselves on a day to day basis.  It is not unknown for siblings with the same genetic cause of myasthenia to have very different symptoms, even if their physical attributes are very similar.  The day to day variation of symptoms also makes it difficult to set goals and treatment plans as the needs of the child, or their ability to comply, may be constantly changing, with no recognisable pattern.  It is for this reason that regular, frequent physiotherapy involvement should be available.  This will help to ensure that any potentially serious problems are readily identified and dealt with.

Things to look out for

With myasthenia, we can be fairly confident in saying that fatigue is the primary symptom.  Physiotherapy is mostly concerned with the secondary effects of that fatigue, rather than treating the fatigue itself and these symptoms can be very varied. (In most cases we would expect some form of medical treatment to target the fatigue.)  In terms of what a physiotherapist might be concerned with, here is a list of some things to look out for, particularly if regular physiotherapy is not available for your child:

  • A change in walking pattern or posture e.g. more walking on toes, or not being able to stand with straight knees
  • Difficulty with going up/down stairs, or getting on/off of chairs
  • Complaining of pain in joints or muscles
  • Taking longer to get dressed
  • Finding it difficult to hold objects such as cups, pens or cutlery
  • Becoming more slumped when seated, perhaps backwards or sideways

This is a very limited, general list and in no way does it reflect any particular child, or type of myasthenia.  Remember, only a thorough assessment by a physiotherapist will ensure that each child’s needs are identified.

Where to get help

If your child does not have regular (frequent) input from a physiotherapist it is important to try and get this established.  Often the first point of referral would be through your paediatrician, or neurologist, but GPs can also initiate referrals.  Other therapists or health professionals that your child may see can also assist with referrals.  This could be a speech and language therapist, occupational therapist or a school nurse.  Often, the SENCO (special educational needs co-ordinator) in your child’s school should also be able to assist as they may have contacts with relevant therapy services in your area.

For younger children who are not yet at school,” Surestart”, or other family centres, as well as health visitors often provide a good point of contact with therapy services.

 

Summary

  • Physiotherapy can help maximise functional ability and reduce risk of developing serious illnesses
  • Physiotherapy input should always be specific to the child, not the condition
  • Regular/frequent reviews will help to identify changes, or new problems early on
  • It is important to seek a physiotherapy referral if your child is not already under the care of a local physiotherapy service
  • Myasthenic symptoms can vary widely on a day to day basis, so there is no ‘normal’
  • Physiotherapy will not cure myasthenia