Participation at school and child care is key to building self-esteem and giving children a sense of belonging. It is important to maintain open communication with the family of a child with Sickle Cell Disease (SCD) so that they can thrive in these out-of-home environments. When teaching or caring for a child with SCD the following must be considered for the sake of their physical and emotional wellbeing.
Children with SCD are at greater risk of serious infection. A typical sign that a child has got an infection is a temperature above 38ºc. Temperatures that include pain or breathing difficulties are considered to be a medical emergency and medical attention should be sought immediately.
Pain episodes are common in children with SCD and can occur in any part of the body, lasting hours, days or weeks. Children with SCD often experience pain daily which can vary from mild to severe. Changes in ‘pain patterns’ or behaviour is a sign that pain may be worsening. If a child is experiencing a pain episode, a heat pack should be applied to the area. Cold packs should not be used as they can make the pain worse.
Children with SCD need to stay well hydrated and should always have access to water during lessons. Sipping water often throughout the day can help to lessen pain episodes. Children with SCD will also need to take bathroom breaks more often, especially on very hot days.
Changes in the weather can sometimes cause a pain episode for children with SCD. During extreme heat or cold children with SCD should be placed in rooms or areas where the temperature can be controlled (e.g. air conditioned room). They should also not take part in exercise while it is too hot or cold.
Most children with SCD can do moderate exercise unless otherwise stated, however they should be allowed to take regular breaks during exercise, including water breaks whenever needed.
If the child complains of pain or fatigue they may be excused from exercise, but could be involved in the activity in a different way, such as keeping score during a game.
Special care for injuries
Do not apply cold packs to the site of pain or injury. Other first aid measures can be used, such as rest, compression and elevation.
Children with SCD can become targets for bullying because they can be smaller than their peers and may start puberty later. Not being able to participate in activities or sports as easily as others can also cause them to become isolated. This isolation can be magnified when children with SCD need to take time off from school which makes it harder to socialise with peers.
Some absenteeism will be needed for children with SCD to go to necessary appointments with doctors and specialists. A child will probably have to be absent from school entirely when they have episodes of fever or pain that can last for several days, or when they are admitted to hospital.
Haematology and Haemophilia Service
Queensland Children’s Hospital
Level 5, 501 Stanley Street, South Brisbane
t: 07 3068 3480
t: 07 3068 1111 (general enquiries)
In an emergency, always call 000.