Muscular Dystrophy - Children

Last updated 27-11-2024

Two children playing. One in a wheelchair

It is individual which assistive products that are relevant for a child with muscular dystrophy and the childs family. This article gives an insight into which assistive products that can be relevant regarding mobility, communication, play, and other daily activities.

Muscular dystrophy is a generic term for a line of neuromuscular diseases, which affects the interaction between nerves and muscles. There is a big difference to which degree and how a child’s functional capacity is affected due to the muscular dystrophy.

Therefore, there is a big variation in which assistive products will be most beneficial to your child and the family. Some children may need assistive products that stabilize their body, help save energy and muscle power, or compensate for reduced ability in certain activities.

As muscular dystrophy develops over time, the progressive aspects in the diagnosis must be taken into consideration when choosing assistive products. Apart from that, the child’s growth and general development can be significantly important when choosing assistive products.

In many cases it will be appropriate to introduce an assistive product to a child at an early stage, so the child can become familiar with the assistive product in due time. In order for the child to have the energy to participate in play and other activities, it is important that the child’s network is supportive in using the assistive products.

When you want to find assistive products for children in AssistData, you can filter the products by selecting “Properties” and mark “Yes” in “Intended for children”.

In this target group entry, we describe assistive products for children with muscular dystrophy. If you seek knowledge on assistive products for adults with muscular dystrophy, please refer to the target group entry Muscular Dystrophy – Adults.

Assistive products for respiration are not included in this article.

Movement and mobility

In this section, we will present assistive products for supporting the child’s movement and mobility.

Walking children

If your child has a fairly good gait function, they may be able to use a rollator. Most rollators have four wheels and are intended for pushing.

There is also posterior rollators, which are pulled, they can be a good alternative if your child needs to walk upright.

If your child can ride a bike, but has difficulties keeping their balance on a normal bike, you can consider a tricycle or a bike with stabilisers. It is important that you choose a bike where the seat height can be adjusted to make it easier for your child to get on or off the bike.

Alternatively, you can consider a running bike, perhaps with three wheels. Both bikes and running bikes come in versions with low boarding height.

For some children an unpowered scooter can be a good solution. Some scooters have a seat so the child can rest on the way.

Both bikes and unpowered scooters can have an electrical power unit. If there is power unit, there are regulations regarding the child’s age and insurance conditions, to which you should pay attention. Please refer to the website of the Danish Road Traffic Authority. In case the scooter is powered and with a seat, it is considered a moped.

Children in wheelchair

There are many things to consider when choosing a wheelchair for a child. Most fundamentally important is the child’s functional level and wishes for participating in certain activities and play. It is also very important to consider the development and future progression of the child’s condition.

For instance, it is important that the child’s sitting position is regularly assessed to avoid misalignments. Choosing a wheelchair should always take place in close collaboration with professionals.

There are roughly four different types of wheelchairs for children:

An active manual wheelchair for children who are able to propel and steer the wheelchair by pushing the hand rims.
Manual wheelchairs for children who need substantial body support and who can’t propel and steer the wheelchair themselves.
Powered wheelchairs with powered steering (joystick) for children who needs body support and who can’t propel a manual wheelchair.
Powered scooter for children with some walking ability.

You can get a power unit for manual wheelchairs integrated in the driving wheels. This reduces the force it takes to drive the chair forward.

The electronic steering system, e.g. a joystick or a touchpad on the powered wheelchair, can be configured in many ways and be adapted to the needs of the individual child.

For small children with no walking ability, there are buggies with many optional settings and the possibility of individual support of the body, e.g. with a modular seating system.

Seated activities

Many children with muscular dystrophy need for a good activity chair, e.g. in school or doing homework at home. For that purpose, it may be appropriate with an electrically operated chair with a high lifting range, to allow the child to be close to the floor but also get the necessary help to get up from and sit down on the chair.

In order to prevent e.g. scoliosis, it is important to be observe whether your child can maintain an adequate sitting position when playing on the floor. There is special furniture like stabilizing seat shells or corner-chairs that for some children can contribute with good support when sitting.

Read more in the guide Activity Chairs.

The good bed

To make sure you can obtain a convenient working posture when assisting your child in the bed, it will be a great advantage if the bed has electrically powered height adjustment.

Beds for children have various adjustment possibilities that can be relevant, depending on your child’s needs. For bigger children, a hoist can be relevant by the bed, so you can avoid lifting heavy loads.

If your child lies very still at night, it would be a good idea to use positioning cushions to support the child’s position to avoid misalignments in the joints. A professional can guide you in using positioning cushions for the individual child.

Please read more in the guide Care Beds for Children.

Toileting

If your child cannot sit on a regular toilet, they can use a commode chair with body support. Some commode chairs have electric height adjustment, which enhances your work posture when helping your child toileting.

Commode chairs with a tilting function can support the child, if they cannot sit straight on their own accord. Please observe that tilting backwards can make it more difficult for your child to pee or have bowel movements.

For the younger child there are special toilet seats for the child to sit on. Some of these are potty shaped.

If keeping the balance is a challenge, your child may benefit from arm and back supports in connection to the toilet. The arm supports can be mounted on the toilet-seat, on the wall behind the toilet, or on the floor. You should choose arm supports that can be moved away when not being used, to have easier access to help your child during toileting.

If your child has problems getting up and sitting down, a raised toilet seat may be helpful.

Bathing

When your child is small, you can wash them in a bathtub – possibly a height adjustable bathtub. There are inserts for bathtubs that can support your child’s head and body and make sure that the they do not get their head under water.

If your child has siting ability, they can use a seat placed in a regular bathtub. The seat can be adjusted for the individual child and can have a lifting function.

If bathing your child in a bathtub is not possible, you can use a shower chair in the shower cabinet. Shower chairs come with or without castors and with more or less support for the child.

If your child is standing in the shower, you can increase safety by using a non-slip bathmat, get non-slip coating on the floor, mount grab bars on the wall, or use a shower stool.

If your child cannot bathe standing or sitting, a height adjustable bathing stretcher could be an alternative. For a bigger child it would be a good option to combine the bathing stretcher with a hoist fixed to the ceiling to avoid too many heavy lifts.

Clothing

When it comes to clothing, a variety of solutions can be a relief in everyday life, both when it comes to clothes with special features and assistive products for dressing and undressing.

If your child has problems reaching their feet, it can be an option to use a long shoehorn, a device for putting on or removing socks, and a dressing stick for the trousers. There is also a range of alternative closing mechanism if your child has a hard time dealing with buttons, zippers, or laces.

Depending on your child’s needs, there are clothes with different special features to relieve everyday life. If your child has problems staying warm, there are clothes with a low weight made of wool or down, or clothes with a battery-powered source of heat.

There are also clothes with special features that makes it easier to get dressed or undressed. Examples of such clothes could be outerwear with longitudinal zippers in sleeves or legs, and clothes fitted for a sitting person.

There are companies that manufacture or fit clothes for individual measures and needs.

Communication and alarm systems

You and your child may need support for communication in various ways.

If your child’s strength of voice is weakened, making it hard to hear what the child is saying, they can use a voice amplifier. A voice amplifier supports the child’s voice and amplifies the volume of the voice.

If your child’s ability to speak is severely impaired, it may be necessary to use a dialogue unit, activating an electronically recorded voice by pressing buttons or pointing at a keyboard or a screen. Dialogue units come with options to activate a few or many voice messages and can have various operating options. It is important to update the software in the dialogue unit regularly concurrently with the child’s development and gaining new experiences and interests.

Your child can also use low-technological assistive products for communication, e.g. manual communication books. Using the books for communicating, the child points to pictures or words. The images and words need to be changed continuously to stay relevant for the child.

If you need to be able to step in quickly when your child needs help, it can be relevant to use an alarm. It may be a baby monitor, but there are also various other forms of alarm systems, e.g. with or without two-way communication. It is important that your child should have the motor skills to operate the alarm system. You could look into alarms that can be activated with a cheek switch, or controlled with the chin or a touch sensitive switch.

Eating and drinking

If your child experiences trouble using regular cutlery, it is an option to use customized cutlery. It could be cutlery made in a very light material (low weight) or cutlery with adapted grips making it easier for the child to hold on to it. There are also loose grip adapters of various shapes that can be attached on your family’s regular cutlery.

You can also use grip adapters mounted on glasses to facilitate drinking or on cartons to facilitate pouring. Many of the grip adapters are made in lightweight material making it possible for the child to lift the glass or the carton.

If your child experiences the food sliding around the plate, there are plates with high rims, or loose rims that can be mounted on regular plates.

If your child has trouble drinking from a glass, for instance if it hard to lift the glass, they can use a straw. If your child’s suction ability is weakened, it may be an option to use a straw with a valve that makes sure that the fluid does not run back into the glass when it has been sucked up.

Toys

To support and develop your child’s motor abilities and to support their social and emotional development, it can be relevant to use customized toys and games. For outdoor use, you can have special swings that have support for the body, or swings where the child is lying down while swinging.

Your child’s motor abilities can be increased by using e.g. play mats, standing equipment, and balls. As accessories for dolls and teddy bears, you can get leg braces, wheelchairs, and other gear representing assistive products. These can be an invitation for a dialogue about using assistive products if your child already uses this or will need to use it in the future.

If your child is using a smartphone, tablet or a gaming console and has trouble holding on to it, you can use different stands that can be fixated and placed within the reach of the child.

If your child likes sports and moving about, there is a range of assistive products targeted for different sports, from water sport to team ballgames. In this way, your child has the opportunity to participate in sport activities by using assistive products designed for that purpose. For instance, there are specially designed sports wheelchairs for hockey, ramps for boccia-balls or assistive products for floating to use in the pool.

Please read more in the guide Toys and Games.