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Supporting families with a craniofacial condition in the UK and overseas
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Health

Health concerns are common for children with Craniosynostosis. Many concerns will relate to specific health issues linked to each child's condition and will be managed by the Specialist Hospital they are under. If you have specific concerns then please raise them with the craniofacial departments in the relevant hospital and they will advise you what to do next. If needed, they will arrange a suitable appointment for you at the hospital or may suggest you see your GP for an initial consultation.

Some health issues will be the responsibility of the family doctor to manage. Children with Craniosynostosis will pick up bugs and viruses like any other child. Where this is the case, your doctor should be able to treat your child in the normal way e.g. perhaps by prescribing antibiotics for a chest or ear infection. Most GPs are sympathetic to patients with underlying health problems and will see your child quickly if you request it. If your GP is unfamiliar with your child's condition then you can print off and show them the appropriate leaflet from this website. You can also put them in touch with the specialist hospital and direct them to this website for further information to help them treat your child as effectively as possible.

When children are particularly young, it can be difficult to know if symptoms are connected to their condition or not. For example vomiting, lethargy and lack of appetite are often experienced as a result of a stomach bug which your GP can help with. They can, however, also be signs of increased intercranial pressure (ICP), which your specialist hospital will need to investigate.

Equally a chest infection may cause some children with Craniosynostosis greater problems than unaffected children, sometimes resulting in the need for a short spell in a local or specialist hospital to aid breathing and to get on top of an obstinate infection.

The important thing is to have telephone numbers for your specialist hospital craniofacial department and for your GP to hand so that you can access the appropriate care that your child needs quickly.

Some children with more complex craniofacial conditions may need specialist dental treatment as they grow up.  This will normally be handled by the specialist hospital, often in the teenage years, but normal rules apply to general dental health and hygiene. All children should see their family dentist regularly for check-ups from the age of 2-3.