Health Issues


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Common Health Issues

Parents and carers of children with Trisomy 13 or Trisomy 18 often have similar concerns about their child's health and the best way to manage their child's healthcare needs.

Assessing Pain

The Paediatric Pain Profile (PPP) is a behaviour rating scale for assessing pain in children with severe physical and learning impairments. 

You can download the PPP tool as a pdf from their website, or oder printed copies.

Tests for Heart Defects

There are tests to determine the extent of a heart defect, and these will include a physical examination and possibly blood and urine tests. After reviewing the examinations and tests the heart specialist (cardiologist) will make recommendations about possible treatment and may want to see the child at regular intervals.

Chest X-ray: Provides information about the size and shape of the heart and the lungs.

Electrocardiogram: Electrical impulses generated by the heart beat are recorded on a graph.

Echocardiogram: High frequency sound waves create an image of the heart.

Health Issues - Scotland

If you are caring for a child with Exceptional Health Needs in Scotland then the CEN website is a valuable source of information and resources.

Families whose children spend time in hospital or who are admitted to hospital in emergency might want to look at the sections on care planning procedures, which you may want to discuss with professionals working with your child.

As a partner organisation SOFT UK also has the opportunity to participate in their research programmes, which help inform policy and practice in the NHS and the wider multi-agency framework.

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