Dáil Éireann debate -
Thursday, 24 Oct 1991

Vol. 411 No. 6

Written Answers. - Sotos Syndrome.

Roger T. Garland

Question:

82 Mr. Garland asked the Minister for Health if his attention has been drawn to Sotos syndrome; if so, if he will outline (1) the number of sufferers in the country, (2) the specialised treatment which is available for these children, (3) the diagnostic system which is in place, (4) the number of geneticists employed directly or indirectly by his Department; and if he will make a statement on the matter.

Minister for Health (Mr. O'Hanlon)

Sotos Syndrome is an extremely rare condition of genetic origin which involves abnormalities of the central nervous system, mental retardation, accelerated bone growth especially in infancy and other abnormal features. The information on the number of sufferers in the country is not readily available and I will let the Deputy have the information when it comes to hand.

There is no definitive treatment for the condition itself and management of affected children relates mainly to the control of complications such as increased incidence of febrile convulsions. Treatment would be provided through the general practitioners, paediatric and general hospital services.

There are no laboratory or other tests which are specific to the diagnosis of this condition. Identification of children suffering from the condition is essentially based on the recognition by a paediatrician of the clinical features mentioned above presented together in such a way as to indicate the presence of the syndrome.

Genetic counselling services are largely provided in paediatric hospitals and paediatric units and in obstetric hospitals and units throughout the country. In addition, genetic screening and testing facilities are available in the major university hospitals. I established a special committee to examine and recommend how an adequate medical genetics service should be organised. This special committee have submitted their report to me, and this is currently being examined in my Department.