Babies &
Children
Children
Approximately 25-30% of children with severe haemophilia develop inhibitors. An inhibitor will usually appear within the first 50 infusions of replacement clotting factor. Therefore, children with severe haemophilia will have a blood test performed to identify if an inhibitor is present during the first few months of replacement clotting factor treatment.
If an inhibitor is present, Immune Tolerance Induction (ITI) (please click here for more information) will be attempted to eradicate the inhibitor. It is usual for children undergoing ITI to have a Port-a-Cath® inserted, to ease the process of infusions.
Children may experience breakthrough bleeds during ITI, which take priority as any bleeding needs to be controlled as soon as possible. Breakthrough bleeds may be treated on demand or in some cases using prophylaxis, (click here for more information) with a bypassing agent.
Your Haemophilia centre will advise you on how to treat bleeds, whether the child is on ITI or not. If you have any concerns that a bleed is not responding to the normal treatment, you should contact your Haemophilia Centre straight away for advice.
It is not necessary to prevent your child taking part in day to day activities, you know your child best and will soon be aware of what he can or cannot safely do. However, if you have any concerns your Haemophilia Centre will be able to give you advice on normal daily activity and your child's physical activity. Gentle exercises such as swimming are important to help maintain strong muscles and joints. If your centre has a physiotherapist, they will be able to recommend further exercises that can help to strengthen joints.
It is important for schools and organisations to be informed about haemophilia and specifically about the effects of an inhibitor. In particular, information on how to recognise a bleed is vital (click here for more information on how to recognise a bleed).
Families with children affected by an inhibitor can get additional advice and support from their Haemophilia Centre, support networks, local Haemophilia Society groups and the Inhibitor Support Group (click here for useful links).
