Children and young people

In a family where one parent has HAE it is important to test the children for HAE, as each child has a 50% chance of inheriting the condition. HAE can also occur in children whose parents do not have HAE. The cause is said to be a ‘spontaneous mutation’ of the gene that causes HAE.

HAE symptoms may start at a very early age, or they may not show until adolescence or even later in life. Symptoms often get more severe with the hormonal changes of adolescence. Many children have few attacks and do not require preventative treatment. However, where attacks are disruptive to school or everyday life, you should talk to your child’s consultant about possible prophylactic treatment options.

A child’s HAE management will need regular review throughout childhood to accommodate any changes in symptoms and the growing independence of the child. Every child needs a plan for treatment of acute attacks, even if they have not yet had their first attack and even if they are on regular prophylaxis, so it is important to discuss and agree a plan with your child’s consultant.

Treatment of children follows the same structure as for adults, although some HAE medications are not yet approved for use in children