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How should children with Becker muscular dystrophy travel?

How should children with Becker muscular dystrophy travel?


Becker muscular dystrophy is a hereditary disorder linked to the X chromosome characterized by weakness in the lower limbs. It is a disease that mainly affects men due to this defect in the X chromosome (women can usually compensate a defective X chromosome with another non-defective one), and the first symtoms can manifest themselves from 10 years old onwards. As a general rule, it is usually men who are affected and women who are carriers.

As we can see, this type of dystrophy (with US data putting the incidence rate at one case in every 3,500 to 5,000 births) becomes apparent at an age when the child no longer requires a conventional child car seat. When required to travel in a car, it becomes necessary to have a special seat available, designed to give a greater level of support to the lower body and which is appropriate to the physical characteristics of the child, if these are not provided for by a conventional CRS.

During the first journeys, it is recommendable that an adult travels in the back of the car with the child to ensure he or she is positioned correctly.

The Pediatrician and Child Neurologist Lucía Villacieros Hernández, of the Pediatric Hospital Quirónsalud San José, gives us some key tips for journeys by car:

These children usually present limpness, lack of movement or reduced mobility and muscle weakness especially at the pelvic level which affects the posture and positioning of the child on the automobile seat if going on a car journey.

All of these factors explain why children with Becker muscular dystrophy have special needs, which should not only be provided to them to the same level of safety as other children but also should offer them an additional level of security if their degree of atrophy or weakness requires it, as their body is already more sensitive and fragile than other children.

Given that this is a permanent medical condition, the parents and carers of these children should remember that they must always travel using a child retention system with sufficient support for the parts of the body most affected, for example: a supplementary harness to keep the child's torso fitting snugly and erect against the seatback, padded cushions for the seat to help maintain the correct posture or a headrest with wing supports, a collar or a cap with velcro to keep the child's head straight.

The use of special needs child seats

These seats for children with special needs are installed facing forwards and are designed to offer greater postural support, i.e. the child is more firmly strapped in than with conventional restraint systems.

These are seats that can be used in a number of different circumstances, from lack of muscle tone or a lack of control in the upper body (including the neck and head); conditions such as cerebral palsy, spina bifida and other types of bone deformities and, of course, for any variety of muscular dystrophy.

These types of seat are completely different from conventional ones which, remember, are designed for children with a height of between 135 and 150 cm, which is the stage they would move on to using a booster seat. The most common designs are suitable for children weighing between 9 and 59 kilos, and with a height of up to 173 centimeters. As we said at the beginning, Becker muscular dystrophy can manifest itself from the age of 11 or 12 years old.

Seat belts are used to hold them in place along with a series of additional fastening straps to facilitate traveling in complete safety. We have to bear in mind that the combined weight of the child and the seat itself could be quite important, and maybe relying solely on the support of the car seat belt might not be enough to guarantee the level of immobility required for the special needs child seat.

In some cases specific fastening points are required in the vehicle to be able to fit the aforementioned additional straps, points that need to be obtained directly from the manufacturer by means of a minor procedure.

To assist in maintaining the correct sitting position, these seats may have special features available such as cushioned supports for the head, at the sides or in the groin area, contoured support surfaces made to measure for the child or interior harnesses with five anchor points.

Some seats offer a longer base or a footrest to maintain hips, knees or ankles at a particular flexion angle; others offer reclinable backrests and adjustable ones using wedges or other devices. Other models can be paired with wheeled bases for transport purposes outside the vehicle or to be placed in school buses.

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If you require a special needs child seat you should check with the therapist, who will help you identify the seat that offers the best solution for the specific postural requirements of your child.

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