Redbridge SERC

Brittle Bones / Osteogenesis

Description

  • Brittle bone disease is the common name for a large group of conditions.
  • The most common cause is Osteogenesis Imperfecta, this is known as 'brittle bones'.
  • People with OI have brittle bones that break easily.
  • Fractures can heal normally, but the frequency of fractures may result in deformity and in some cases reduced stature.

Fact sheets

Training / Help

SEaTSS can support students with this condition.

To refer to SEATSS please use this link:

https://eforms.redbridge.gov.uk/single-point-of-access-referral-form-for-education-support/

Videos

Screenshot for video: Tomcat adapted trikes

Tomcat adapted trikes

Tomcat Trikes in action

Screenshot for video: Sophia -OI My Story

Sophia -OI My Story

This is an accessible video- ideal to show to other children 

Learning Aids

Please offer me a seat badge

Please offer me a seat badge

Available from:

TfL have recently introduced a badge to help Adults and Children who may have difficulty standing/ waiting on all TfL transport. It is designed to be supportive for hidden disabilities and medical conditions. The badges are free- you do notneed…

Illustrations

Stickman Communication

Stickman Communication

Stickman Communications create brilliantly simple cards to help communicate a variety of conditions/ disabilities. They currently cover; * ASD * Sensory overload * Allergies  * Medical conditions  * Bowel and bladder conditions * Hypermobility and EDS * Migraine * Seizures * POTS /SVT * Visual impairment * Mental Health *…
Full Size image

Source: http://stickmancommunications.co.uk/epages/747384.sf/en_GB/?ObjectPath=/Shops/747384/Categories/topics

Frequently Asked Questions

  • What are the factors to consider in school?
    • Care and emergency plan— outlining procedures if pupil has a suspected fracture / injury
    • If a fracture is suspected– do not move the pupil and phone for an ambulance.
    • Attendance can be affected due to hospital stays and fractures—try to plan / support pupil to catch up
    • Train peers to ensure classroom/ corridors are always keep tidy with no items that could cause the pupil to trip
    • Consider using a disabled toilet or provide grab rails in classroom toilet.
    • Coat peg/ school tray/ locker to be positioned on the end of line/ top tray
    • Pupils with OC to be positioned at the end or beginning of line, or move around school ahead of class group.
    • Seek support with chair/ table adaptations from OT / Physio
    • Handwriting can be difficult over time– consider gel pens, access to computer, scribe, extra time in tests.
    • Supervision / alternative provision at break time to ensure interaction with peers safely.Adapted cutlery/ scissors/ pens to promote independence.
    • Multiple fractures can make writing difficult - consider ICT/ scribe/ Cloze procedure/ slope board
    • Additional set of books to save carrying them in school.
    • Art/ DT/ Science/Drama lessons may require adult support as often these lessons can involve movement within the classroom & equipment can be heavy.
    • Peer awareness of condition and how to support ( with student's permission)

     

  • Is there more than one type of Brittle Bone disease?

    There are four types of osteogenesis imperfecta;

    • Type 1: is a milder condition which has relatively few fractures and blue/grey whites of the eyes (sclera).
    • Type 2: causes very severe fractures resutling in stillborn babies or death within a few weeks of life.
    • Type 3: is severe, although not life threatening, however growth may be impaired significantly.
    • Type 4: is as Type 1 but without sclera.
  • What are the educational implications for students who have Brittle Bones when accessing PE activities?
    • Always seek advice from the student's physio before allowing access to the PE activities.
    • Avoid all contact sports.
    • Care needs to be taken when moving around crowded areas eg corridors, playgrounds, lunch halls
    • If the student does report a 'bump', this requires immediate attention and the agreed care protocol followed.
    • Encourage activities which develop strength to increase joint stability.
    • Use lightweight equipment
    • Low impact activities
    • Swimming- change in a less crowded area, support getting up and out of the water, jumping in not allowed, extra care and space in the water, keep eyes open to avoid collisions
    • Dancing- controlled movement in a protected area
    • Athletics- light equipment, concentrate upon accuracy and precision
    • Encourage individual games eg bowls, table tennis, Nintendo Wii/ X box Kinnex

     

  • What are the physical implications for students who have Brittle bones ?
    • Bones more liable to break
    • Back may curve ( scoliosis)
    • Joints are hypermobile( more bendy)
    • Teeth may be translucent or grey
    • Skin may bruise easily
    • Hearing loss
    • Generalised pain
  • Is there any treatment for Brittle bones?
    • Fractures are treated as they occur.
    • Ongoing physio support and advice to avoid further fractures
    • Plaster casts can be used and other Orthopaedic techniques
  • What causes Brittle Bone disease?
    • It is a genetic condition- that impacts the body's production of collagen especially on the bones & tissues
    • There is a genetic abnormality in the structure of the protein component of the bone, as a result fractures occur very easily during the course of normal everyday activities.
  • What do I need to know if a student is going to have limb lengthening surgery?
    • Access to school classroom, playground, assembly hall etc needs to be planned before surgery
    • Access to a disabled toilet with room to enter in a wheelchair.
    • Change position in classroom while in wheelchair, to allow easy access and prevent the leg being knocked.
    • Consider access to higer table to allow room for wheelchair and leg extended
    • Plan how to 'catch up' student with work missed and social contact with peers
  • What activities should be encouraged?
    • Ball Skills
    • Racket sports
    • Music
    • Dance
    • Balance activities with support
    • Swimming
    • Lightweight tools– eg foam javelin, foam balls, scarves instead of balls
    • or consider an Individual PE Challenge Programme
  • What must students with brittle bones avoid doing?
    • Jumping off objects
    • Bouncing/ trampolining
    • Contact sports
    • PE activities that could mean falling

Family Resources

Whizz Kids

Website: 
http://www.whizz-kidz.org.uk/
Description

Whizz-Kidz is a charity aiming to provide disabled children and young customised mobility equipment, training, advice and life skills.

This Charity provides equipment to children that is not available on the NHS. They also run Wheelchair training courses/ Mobility centres in Dagenham and Havering.

Strongbones holiday homes

Website: 
http://www.strongbones.org.uk/index.php?option=com_content&view=article&id=51&Itemid=54
Description

Their respite homes are all fully adapted to accommodate wheelchairs. The homes have fantastic amenities including their own swimming pools and children's entertainment.

Many of the parents they select for a holiday have had to give up employment to become full time carers to their children.

For this reason they have decided to grant each family a one week stay with £250 spending money to cover provisions and travel expenses.

They book families in from the months of April-September each year and are always booked to maximum capacity.

Contact a family

Website: 
http://www.cafamily.org.uk/
Description

A UK wide charity providing advice, information and support to parents of all disabled children.