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How should children with arthrogryposis multiplex congenita travel by car?

How should children with arthrogryposis multiplex congenita travel by car?

20/09/2017

Arthrogryposis multiplex congenita (AMC) is not a specific disease but rather refers to symptoms that can be associated with a number of different diseases, and is characterised by the development of multiple joint contractures which can affect two or more areas of the body prior to birth.

The exact cause of AMC is unknown and is not fully understood. It may be related to decreased fetal movement during development (due to lack of sufficient space in the uterus for normal movement); as a result of abnormal muscle developoment; malformation of the central nervous system (the brain and / or spinal cord); or because of abnormal development of tendons, bones, joints or joint linings.

In most cases it is not hereditary, although genetic causes can be identified in up to 30% of those affected. Diagnosis can be complicated given that this is a disease which can have a genetic basis, or more specifically, because it is a rare disease and doctors must carry out physical examinations, analyse the patient's medical history and symptoms, and examine the laboratory test results.

In this way, treatment can be decided upon, which will be different for every patient and will depend on the individual's particular symptoms. Treatment can include physiotherapy, removable splints, exercise and surgery. Fortunately many patients have a good diagnosis and it is possible to achieve joint mobility and function, meaning they can lead productive lives on entering into adulthood.

What precautions should we take when traveling by car?

Due to possible mobility issues of people affected by AMC, it is important to carefully plan any trips, establishing frequent stops in order to rest and change position if possible. Because of the nature of this condition those affected should avoid bad postures during the trip and should pay particular attention to how the child is positioned in the child restraint system.

With regard to the child car seat, children with these kinds of issues should always travel in child restraint systems appropriate for their particular conditions, in the safest position possible, and in a rear-facing seat for as long as possible.

One of the greatest difficulties we might encounter is when lifting and moving the child, at which point we should be paying them our full attention and taking the utmost care.

As in other cases of children with special needs, the specific measures you take will depend on the specific health issue of the child and their general condition; it may be the case that you cannot change their normal routine much and they may even require a special child seat. The most important thing is to ask for advice from a specialist at any time, and whenever we have any doubts whatsoever.


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