Bone Disease Archives - Resource Library - Sheffield Children's NHS Foundation Trust

We have received your referral at Sheffield Children’s, and you are now on the waiting list for an appointment with the Metabolic Bone team. Where will the appointment be? Metabolic Bone clinics are held at the main Outpatients department at Sheffield Children’s Hospital. This information will...

Babies born with achondroplasia are more likely to develop a small curve in the lower part of the back. This is called a gibbus. The gibbus will become more noticeable as your child starts sitting up, but it usually improves once your child learns to pull to stand and walk. Babies with...

The physiotherapists in the metabolic bone team are: Claire Hill, Davina Ford, Caroline Marr, and Grace Whitaker. They specialise in working with children that have osteogenesis imperfecta, and other bone conditions such as X-linked hypophosphataemic rickets, hypophosphatasia, juvenile osteoporosis...

What is humeral rodding? Rodding surgery provides rigid fixation where the bones can heal in the correct alignment. The rod is called an ‘intramedullary’ rod which means ‘inside the bone’. You may have been offered this type of surgery because you have had lots of arm...

What does occupational therapy mean? An ‘occupation’ is anything we do. It could be going to school, drawing a picture, or eating a meal. We are here to help children be as independent as they can be whilst doing whatever matters to them.   Our occupational therapists in the metabolic...

Why is there a social worker in the osteogenesis imperfecta team? As part of your multidisciplinary team, you will find a social worker within each of the centres of the osteogenesis imperfecta Highly Specialised Service in England. The 4 centres are in Birmingham, Bristol, London Great Ormond...

Top tips for sleep in children with osteogenesis imperfecta Muscular aches and pains are common in osteogenesis imperfecta (OI) especially if you have had an active day. These can be worse at night as this is a time to switch off and relax, distractions are less, which can make aches and pains more...

How can teeth be affected? Osteogenesis imperfecta Sometimes teeth can be brittle and chip easily (dentinogenesis imperfecta or ‘DI’). Teeth with DI are more prone to have decay and tooth wear. Very often children may need dental treatment. As bones are softer there is a higher risk of...

What is a DEXA scan? DEXA stands for dual energy X-ray absorptiometry. The scan directs 2 low-strength X-ray beams at your child’s body, and a computer uses this data to calculate the density of their bones. How can we prepare for the scan? The scan room has a tracking hoist attached to the...

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....

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....

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 resource has been developed by Metabolic Bone Disease service to include children with osteogenesis imperfecta (OI) in mainstream P.E. lessons at school. In general Please seek specific advice from the pupils physiotherapist for their inclusion in P.E. lessons. Specific advice and guidelines...

Why has my child been referred to the metabolic bone disease team? When a child is diagnosed with a skeletal dysplasia, they will be referred to a team of specialists within a hospital who will help you to understand more about your child’s condition. Our team includes: a consultant specialising...

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. It affects 1 in 15,000 to 1 in 40,000 babies. Achondroplasia is a condition caused by a change in a gene called FGFR3....

It has been suggested to you that your child may benefit from treatment with oral bisphosphonates. This information leaflet is intended to answer some of the questions that you may have. Why does my child need treatment? When we saw your child in clinic their medical and fracture history was...

Introduction Babies diagnosed with osteogenesis imperfecta (OI) may have fractures which appear to have little or no apparent cause. It is important to realise that with the best care in the world, babies with brittle bones may still have fractures. Babies with brittle bones enjoy the same things as...

Specialists in osteogenesis imperfecta The Paediatric Bone Disease Team, led by Dr Paul Arundel provide a focused multidisciplinary service for children with osteogenesis imperfecta (OI), also known as brittle bone disease. Sheffield Children’s NHS Foundation Trust is a national and international...

Top tips for sleep in children with osteogenesis imperfecta Muscular aches and pains are common in OI especially if you have had an active day. These can be worse at night as this is a time to switch off and relax, distractions are less, which can make aches and pains more noticeable. Ideas which...

What is transition? Transition is a process of moving from one place or stage of life to another; moving from primary to secondary school is a transition your child will have already made. As your son or daughter is approaching their teenage years we will be encouraging them to be more aware of...

Introducing the idea of transition As you are getting older it is important to start talking to you about your transition from seeing the Metabolic Bone Team at Sheffield Children’s Hospital to being seen at an adult hospital. What is transition? Transition is the move from one place or phase...

You have been invited to attend an intensive therapy week with the metabolic bone disease team. This resource will give you an idea of what to expect from us throughout the week and what will be expected of you and your parents and carers. What is an intensive therapy week? During an intensive...

Your child has been invited to attend an intensive therapy week with the metabolic bone disease team. This resource will explain what is involved within the intensive therapy week. It will give you an idea of what to expect throughout the week and what will be expected of you and your child. What...

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,...