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Osteogenesis imperfecta in primary school

Starting primary school

The transition into primary school needs to be planned and well managed.

The school should arrange a meeting with the child’s parents and carers and any other professionals before the child starts school. This gives everybody the opportunity to get to know each other, highlight specific needs that the child has and plan how these needs are going to be met.

If the child with osteogenesis imperfecta is a wheelchair user, the environment should be assessed to make sure that the school is accessible. Often an occupational therapist can assist in this area, however it is the school’s responsibility to carry out the risk assessment.

Care plan

A plan will be needed to describe the pupil’s needs and how the school plans to meet these needs.

The plan must also include details if there is an emergency. This needs to be agreed between the parent and carer, and the school, after a consultation with the relevant medical practitioners. Plans should be reviewed every year or if the pupil’s health needs change. The plan should identify the key people and their roles in the event of an emergency. For more information please refer to the Brittle Bone Society fracture management guidelines.

Risk assessment

It is the school’s responsibility to carry out a risk assessment before the pupil starts school.

This should detail all potential risks within the school environment and could be reviewed on a termly basis. Additional risk assessments will need to be carried out for school trips and activity days, special events or a specific manual handling risk assessment after a fracture. The osteogenesis imperfecta team at the hospital may be able to offer general advice if needed.

Educational health care plan and additional support needs

Consideration needs to be given to the child who may need additional support during their time at school. This is individual to the child.

It is most often related to their physical, medical and safety needs as opposed to learning needs. Often this additional support is necessary for break times and lunch times and physical activity sessions. Independence and inclusion should always be encouraged.

Absence

Due to the nature of the condition, the pupil with osteogenesis imperfecta will likely have planned periods of absence from school for essential medical appointments and administration of medication.

For planned absences it would be best to make sure that all relevant work that will be missed during this time is given to the pupil or their family so they have the opportunity to continue with their school work.

Osteogenesis imperfecta can also be unpredictable in its nature, the pupil may also have unplanned absences from school due to a new injury or fracture. This may or may not require medical intervention. If this is the case then close communication with the family should be maintained and essential work should be provided for them to continue with at home or hospital to make sure there are no gaps in their education.

In exceptional circumstances of prolonged absence, home schooling should be sought as soon as possible.

Hearing loss

Hearing loss is a medical complication of osteogenesis imperfecta which can occur at any age and in pupils with any type of osteogenesis imperfecta. This could affect interaction with the classroom and school environment, behaviour and ability to learn. If you have any concerns with regards to this it is worth in the first instance raising it with their parents or carers.

Social relationships

Osteogenesis imperfecta impacts a pupil’s health, and it can affect self-esteem, self-confidence, friendships and participation.

Pupils with osteogenesis imperfecta have the same needs as others to develop a healthy self-image and to understand their personal strengths, abilities, limitations and weaknesses.

As with any pupil, teachers need to be vigilant about the potential for bullying and the risk of the pupil with osteogenesis imperfecta being excluded from peer directed activities.

School environment

The school will need to consider the current physical abilities of the pupil, but also the potential that they have for fractures.

They may have periods of time in plaster and may need to use a walking aid or wheelchair and will need more support and space than usual. If a child is having difficulty with their mobility, they may need access to a lift for safety and to conserve energy.

Toilet areas

A level access disabled toilet and sink will be needed if the child is a wheelchair user.

They may need equipment, grab rails, and a small step to help them get onto the toilet, and to wash their hands. They need to feel safe whilst also feel independent.

Non-slip flooring should be considered. The area should be checked to make sure it is clean and dry before the child uses it.

Cloakroom and corridors

Clothes pegs should be at a height accessible to the child and preferably at the end of the line to prevent the child being pushed or knocked during busy periods.

Cloakrooms and corridors should be kept clear of clutter.

Tables and chairs

Children may have some form of specialist seating for use in the classroom. Other times more simple measures such as a wedged cushion may have been provided or recommended. Usually an occupational therapist or a physiotherapist will have been involved in this process and should be able to advise further.

If the child is in a wheelchair then the table needs to be accessible for them and at a good working height.

Floor time and assemblies

Sometimes a child may be more comfortable sitting on a small chair rather than the floor. This can prevent fingers getting trodden on by other children and may reduce joint aches and pains. If a child is sitting on the floor consider their positioning.

Activities

If the child is shorter than their peers, a small step may be needed to enable participation in activities. Other times the child may be in a wheelchair and the activity may need to be adapted.

Drawing and writing skills

Often children with osteogenesis imperfecta have difficulty writing and drawing because of the joints in their hands and fingers. They may often get fatigued, have joint aches, and pains. This could effect the quality and quantity of their work and lead to a slower speed of writing.

The child may benefit from pacing these activities, by incorporating rest and stretch breaks into the activity.

If you are concerned about this an occupational therapist can often complete a more formal assessment and make recommendations.

Children with hypermobile finger joints may benefit from chunkier pens or pencils, or the addition of pencil grips. It is important to recognise hand writing issues early on.

Tiredness, aches and pains

A child with osteogenesis imperfecta may tire more quickly than other children of a similar age. They may experience aches and pains, especially following physical activity.

Pacing activities and giving the child the option of ‘time out’ for resting may help.

If your child is on medication you should talk to your school.

General housekeeping

Floors should be dry and clutter free as possible to minimise the risk of trips and falls.

A child may need help with doors that are heavy and difficult to open.

Playtimes and lunchtimes

Additional supervision may be needed especially for the younger child as they are often not yet aware of any risks.

As the child gets older and more aware of risks, supervision may be required only from a distance.

It can be a good idea to have a ‘quiet area’ where the child can go with a few friends and undertake other play activities if they wish.

If a child has a specialist seat in the classroom it can be beneficial to have this available at lunchtimes also.

As with handwriting, children may struggle with using cutlery. If this is an area where you notice a child is struggling then an occupational therapist may be able to complete an assessment.

School outings

A child that can normally manage short distances walking around the school may not manage as well on trips that involve moderate walking or activities. If so, the child may require more regular breaks and a buggy or a wheelchair during these times. Plan with their parents and carers in advance of these trips and do a risk assessment.

Physical education and activity days

The benefits is important for a child’s physical and mental health. Increasing general fitness can help manage fatigue.

Children should be encouraged to participate in PE lessons and activities as independently and safely as possible. Activities can be modified to allow participation.

Running and jumping on uneven or unpredictable surfaces should be avoided and children should be encouraged to climb down from any gym apparatus.

Please see our resource on including children with osteogenesis imperfecta in PE lessons.

Contact us

If you have any questions or concerns, please contact the metabolic bone disease team on 0114 226 7890.
  • Consultants: Dr Paul Arundel
  • Clinical Nurse Specialist: Gemma Greenacre, Liz Lee, Clare Crossland, Rebecca Dhillion
  • Physiotherapists: Claire Hill, Davina Ford, Caroline Marr
  • Occupational Therapists: Jill Baker, Kieran Murphy, Nicola Holland
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Disclaimer

Please note this is a generic information sheet relating to care at Sheffield Children’s. The details in this resource may not necessarily 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 you have specific questions about how this resource relates to your child, please ask your doctor.

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Metabolic Bone Team

Sheffield Children’s Hospital

Tel: 01142267890

NHS

Western Bank
Sheffield
S10 2TH

United Kingdom

Switchboard: 0114 271 7000

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