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Achondroplasia in primary school

What is achondroplasia?

Achondroplasia is one of the most common forms of skeletal dysplasia. It is often referred to as a condition causing restriction in growth or short stature.

Features include shortened limbs, slowed growth, short stature and changes in the shape and size of parts of the skull.

This can include a larger and more prominent forehead. The bridge of the nose may also appear flatter. Due to the shape of the passage between the mouth and middle ear, ear infections and problems such as glue ear are more common in children with achondroplasia.

Children often have more flexibility within their joints in their hands, arms and legs. This is often called hypermobility or hyperlaxity.

Sometimes curvature of the legs can develop as a child grows.

In general, children with achondroplasia are happy and can achieve independence in everyday life. Achondroplasia affects boys and girls equally.

What does this mean for starting school?

Going into primary school should be planned well in advance to make sure your child has a smooth transition.

We recommend having a meeting between you and any allied health professionals such as physiotherapists and occupational therapists in your child’s nursery.

This will make sure that your child’s needs can be discussed including:

  • access to the environment
  • movement in and around school
  • necessary equipment provision
  • care plans

It is important that your child sits with their feet fully supported, with the seat base the correct size for your child’s sitting depth, with their back supported.

An occupational therapist will assess your child for suitable seating for the classroom and dining room. Sometimes we will ask your child to sit alongside other children in the classroom and at dining tables.

It is advised that the meeting should include:

School entry care plan

This plan should focus on your child’s needs and how school can meet these needs. This may include 1:1s to help your child with practical activities of daily living such as maintaining hygiene needs, accessing P.E., moving through school or within the classroom.

Risk assessment

A risk assessment should include any potential risks within the environment and outdoor areas for example, steps, steep gradients, change in floor surfaces.

An evacuation plan should also be agreed in the event of an emergency and for fire drills.

Education and health care plan

Additional support may be needed to meet the physical needs of your child. This is individual to your child and is not always necessary.

If your child needs an education and health care plan, you need to apply through the education authority and have one written up with your child’s nursery and other healthcare professionals involved in your child’s care.

Learning considerations

There may be times when your child may have to attend appointments during nursery time. It is best to plan for these in advance and communicate with your child’s school.

Personal, social and health education

As with any child, concerns can arise about their psychosocial aspects of living with a condition. This can impact on a child’s participation in nursery, developing friendships, play and their general health and wellbeing.

Nurseries and families should be mindful if your child seems withdrawn, if they do not take part in school activities, playtime or seems excluded from friendship groups.

If you are concerned about your child’s mental health, you can see a psychologist either through your GP or your child’s clinical team.

Considerations within the school environment

Your child’s physical function and access in and around school need to be considered when accessing key areas, these include:

Hygiene and toileting

The occupational therapist will assess for any necessary equipment to make sure your child can access the toilet and sink. A height-adjustable sink or step box may be needed to make sure your child can reach the sink. Lever taps or tap extensions may be easier for your child to use if they have shorter arms, smaller hands or hypermobility.

Soap dispensers or hand soap and paper towel dispensers should be at an appropriate place to make sure your child can reach them. This will help your child have independence with their own hand hygiene.

A step box can help your child to transfer on and off the toilet with an integrated ring reducer or smaller toilet seat to make sure your child is sat safely on the toilet. They may need help wiping themselves because it may be difficult for them depending on their arm length.

Your child should be encouraged to practise this, so it is important to place toilet paper within their reach.

Cloakroom and corridors

Your child should have their coat peg at the end of the line and at the right height for them to reach. This will make sure they do not get caught up in the hustle and bustle of other children.

During busy times such as going out to play, assembly or lunch times it is best if your child is at the front or back of the line to avoid a crush.

Tables and chairs

A kyphosis is where the upper back and shoulders become more rounded.

A lordosis is where the natural curve at the bottom of the back becomes more pronounced.

A child with achondroplasia is more likely to develop a curve in the back. This is called lumbar lordosis or kyphosis.

It is important to for your child to have good sitting posture. Slouching and slumping, unsupported feet and over reaching to the table should be avoided.

Mobility

Children with achondroplasia are often independently mobile. However, a wheelchair may be be needed for longer distances.

P.E.

A physiotherapist can tailor the activities to suit your child. They should be encouraged to take part in physical activity. This is beneficial for health, wellbeing and muscle strength.

Activities such as ball skills, dance and swimming are good for coordination, balance and strength.

General housekeeping

Access to suitable play equipment can be reviewed by the occupational therapist or physiotherapist.

Floor time

Your child may tire from sitting on the floor for a long time or find it uncomfortable. A floor-based chair can be used for the child to sit on for story time or assembly. This will also make sure good sitting posture. This will be assessed by the occupational therapist.

Fine motor activities

‘Bendy’ joints in the hands can affect strength and dexterity. Fine motor tasks such as the acquisition of handwriting, scissor skills, cutlery skills, buttons, zips and laces may be more difficult to do.

The occupational therapist will be able to suggest suitable pens and pencils to help with their handwriting. Specialist scissors and cutlery can help with cutting skills. They can also recommend strategies to help your child tie their shoelaces, do zips and do buttons.

Fatigue

A child with achondroplasia may tire more quickly than other children. Rest beaks may be needed during the nursery day. Support may be needed for outings to make sure your child can partake and keep up with their peers.

Contact us

If you have any questions or concerns, please contact the metabolic bone team on 0114 226 7890 or 0114 226 7885, or email: sheffield.boneteam@nhs.net

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Disclaimer

Please note: this is a generic information sheet relating to care at Sheffield Children’s NHS FT. These details may not reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If this information has been translated into another language from English, efforts have been made to maintain accuracy, but there may still be some translation errors. If you are unsure about any of the guidance in this resource or have specific questions about how it relates to your child, always ask your healthcare professional for further advice.

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United Kingdom

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