Down’s syndrome occurs in 1:1000 live births and is the commonest identifiable cause of learning difficulties. There is a significant variability in appearance, personality and levels of general health and independence. Some medical problems are over-represented in people with Down’s syndrome and, for this reason, this group of children are followed up regularly by a team usually based in the local child development centre. In Waltham Forest the multidisciplinary Wood Street children’s specialist service team oversee the growth and development of the children with Down’s syndrome, ensuring their health needs are met and their potential for learning maximised. Click here for their generic Specialist Children’s Services referral form. See February 2012’s PDF for links to more resources. I have asked the Wood Street team to add some comments and pathway information below…
In Waltham Forest we have a local pathway which is based on the recommendations of the DSMIG (Down’s Syndrome Medical Interest Group) and adjusted according to our local resources. Children with Down’s Syndrome are seen in the Child Development Clinic and a number of professionals are usually involved, including specialist nurse, physiotherapist, SALT, community paediatrician, audiologist, orthoptist and educational psychologist. There is an initial assessment with the multidisciplinary team usually at the age of 3 months, and annual follow up with the community paediatrician throughout childhood. Parents may be referred to the geneticist for genetic counselling if they wish. General health, growth, development, vision, hearing and thyroid function test are routinely checked. There is a monthly playgroup for children with Down’s syndrome based at Wood Street Health Centre.
It should be noted that people with Down’s Syndrome are at increased risk of developing a number of medical problems such as thyroid dysfunction, diabetes, coeliac disease, constipation, obstructive sleep apnoea, cervical spine instability, haematological disorders, cardiac conditions, hearing impairment, visual difficulties, autistic spectrum disorders. If a specific medical issue arises the child should be referred to the appropriate specialist service.
Transition to adult care is often problematic as there is no equivalent service for adults. The GP is likely to take over the ongoing care, together with adult specialists as required. School leavers can be referred to the adult learning disability service.
In terms of education, children with Down’s Syndrome usually attend mainstream school, but will require specific support. Notification to the educational department is usually done at the age of 2 years.
Dr Paola Mirto
Consultant community paediatrician
NELFT